"I don't really like being pitied, but I prefer being pitied rather than having my problems brushed off. Because at least if you pity me, it means you feel sympathy for me. So you understand that I am going through something that is a bit bigger than what other kids my age go through." I love her maturity and depth :')
@@nic233 are you the one in the video? Well hang in there mate, because we all facing the same problem for our entire life, the thing that help us the most are just be grateful and keep on taking prescription 🙂
@@nic233 i am a sle patient with kidney transplant too. . I do share same thought with u. I also hope my boss and my colleagues can be more emphaty on ms
@@guilinggaoyeh4691 Please turn to Jesus He loves you very much, i was ill for many years but the doctors couldn't really help me, i don't blame them, there was only so much that they could of done for me, Then Jesus gave me a miracle and healed me, He is the God of miracles, God has done amazing things in my life and in the life's of people i know, He can do the same for you and yours, When you need Him call on Him, He is the God of comfort and will there for you when you call on Him, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, God saved someone i love from an illness leading to death, There is nothing impossible to God, It's as simple as asking Jesus into your heart and life to be your personal Lord and Saviour, confess your sins to Jesus, and Jesus will for give you, If you truly seek Him, Jesus will answer you, i know this because He answered me when i called out to Him
Having autoimmune disease makes it a daily mental struggle against feelings of inadequacy and envy toward peers. So glad to be able to have some light shed on such conditions! Thank you :)
Thank you so much for sharing! Kids can be cruel sometimes. I'm sorry you had to deal with someone so insensitive. I hope you meet better team mates in the future.
I suspect you're way more mature than most of your peers. As you grow older I think you'll discover more people who are understanding of your condition. And it's never fair to compare yourself to others... just remember that you're your own person!
@@zuoannchan7415 may I know which religion that you get into? I am thinking to learn religion too for myself, to learn life and appreciate it, I think I really need that =)
Surprised yet happy to see that you chose a male representative for SLE. Since this is already a rare disease and it's more commonly seen on female than male, it could be even harder for guys to accept and get through it. Full respect for standing up and speaking for the rare of the rare.
I have hashimoto disease. Since young I had goitre and it did affect my physical appearance. The turning point came , when I wanted to settle down but could not find any suitable partners. Years passed and I met my husband who is a medical practitioner. He understood my condition , accepted me and took really good care of me especially when I was pregnant. I feel blessed. Joanne is so positive and I see myself in her. You just have to keep going and yes! we are no less capable than any normal person. In fact , most of us are better. It is all in your mind.
Auntie Joanne, I like your cheerfulness. I hope you find someone who loves you for who you are soon. Perhaps, you can volunteer to give tuition to low income students in our own homeland.
Thank you OGS for providing this platform for allowing our voices to be heard.I believe not many know what autoimmune disease is all about. I hope I can play my part in creating awareness that we may be the rare, the silent suffers but we are the strong fighters! Life can be beautiful for everyone, appreciate/cherish what you have.
hi I am also suffering from Myasthenia Gravis and I got diagnosed when I was 18. I am 19 this year. I wanted to ask if the surgery has significantly improved the symptoms and how long did it take to feel the effect. Even though I am on medication I still face some symptoms like difficulty talking and some days it just gets really bad. I am hoping to get this surgery done in July
Thank you for being such an inspiration @Zuoann Chan. You make me realize that there is a silver lining to every cloud, and that there are so many things to be thankful for in life. Even though you have been going through so many difficulties, you stand strong and shine bright as a star to inspire others about the beauty of life. I really truly hope that you achieve every goal and happiness in life. Thank you 💖
as someone who suffers from myasthenia gravis as well, im really thankful that you took this opportunity to speak up and spread awareness for us. i relate to you so much because i also had my surgery done after multiple iv drips and took medications. i wish i could be like you, cheerful and optimistic. sometimes i hoped i passed away during my surgery like how i almost did in the icu. but after watching this, i gained hope. thank you so much.
people don’t realize how much auto immune diseases affects a human, i admire these people in the video where theyve gone through their stages of grief, i haven’t been able to get out of my one year long denial phase
This was a great episode! I was diagnosed with Rheumatoid Arthritis 7 years ago - shoutout to RA people :) And no, it is not Osteoarthritis, they are NOT the same thing. The answers by these brave people really resonated, I'm glad there are more awareness about autoimmune diseases.
"You look normal, are you really sick?" The saddest question one could ask a person suffering from an autoimmune disease. I myself an ITP patient can confirm that. I feel like breaking people's faces when they ask that or comment about my facial hair/hair loss/weight gain due to medications. Be kind to people. You never know what they are going through.🙂
I received a chronic illness diagnosis recently, and this was so comforting, especially the words shared by the man in the navy shirt with the plus signs on it...I feel less alone after watching this.
"I feel like everyone thinks having a transplant is a cure-all but they don't realised that a transplant is the option the doctor only gives when you've reached end-stage. Like when it is really bad enough that nothing else will work." I can relate to this on so many levels. I do not have any autoimmune disease but my cornea was seriously infected and was under treatments for 2 years. My cornea right now is perfectly free from infection, but there is a scar on my cornea that has blurred my vision. The hope that doctor gave during previous sessions crushed during the last check up as the doctor said there is nothing else they can do and advice me to go for a cornea transplant. I was stunned and my mind went blank as I recalled when I was first diagnosed with this, my doctor has listed out several treatments and it expected result, with a slight chance of worst case scenario, which is to go for transplant for it to just HAVE A CHANCE to be fully recovered. Can you imagine how scary is that when the worst case scenario that you have worked hard to try to avoid from it has became your only option right now?
Yes, transplant is a life-changing experience. It was really scary to have to get through, and I remember being terrified and afraid of what would happen afterwards. Let’s stay strong together!
I was diagnosed with Crohn’s Disease when I was 14. Having an automimmune disease really takes a toll on your mental health, and it’s a long journey till they actually find a drug that will help to keep your symptoms under control (remission period). It took me 5 years till things have stabilised that i’m actually not relapsing anymore (21 y/o now). Multiple times during flare-ups I questioned myself why did it have to be me and also thought of dying regularly (the stomach cramps were insane and I run to the toilet 7-8 times a day), but on the outside nobody knows what I’m going through hahaha I just look like a lazy person who falls asleep more in class (chronic fatigue from diarrhoea). Now I’m in a happy relationship and my illness is quite well-controlled and I’m glad that my partner accepts me for who I am. I’ve voiced to him multiple worries of what if I flare up next time cos honestly for us ppl with these diseases we never know when it will strike again and that i’ll be such of a burden hahahah. Oh wells just living in the present right now, glad that life has been good to me for the past 2 years. Thank you for shedding light on people with these diseases because we just suffer so silently and people just brush it off as us being lazy :’) For others out there with autoimmune diseases jiayous❤️
Ahh I feel you. I was diagnosed with Crohns a few weeks ago. After initially being diagnosed with ulcerative colitis last June. But they can't switch my medication to something that I actually need to be on, because of coronavirus... I knew it was a condition that affected the guts but I had no idea how the inflammation would affect my energy levels, my muscles, my brain... It does get you down sometimes. Especially when family members and friends try and brush it off or suddenly become experts.
Victoria Cariad it affected my energy levels sooo badly :’) Is the drug that you are supposed to be on Infliximab or other biologics? For me infliximab was really a life-saver! I’ve gained enough weight to be a healthy weight now and my fatigue isn’t as bad as last time already. I understand that it’s an immunosuppresant though which may make us more compromised to covid19 but from what I read we aren’t more susceptible compared to normal people, just that if we happen to catch the virus we may get more severely affected. Highly recommend biologics although it’s more costly!! You can try talking to your doctor about it if other drugs don’t seem to be working for you :) all the best and stay safe during this period!!❤️
I have had an autoimmune disease for over 50 years ankylosing spondylitis also had had bouts of inflmeitory bowel disease and sin problems yes these diseases are awful with no definate cures I am now 72 but had long periods of unemployment sickness and poverty
rheumatoid arthritis gang gang anyone? I was diagnosed 2 years ago. The thing about autoimmune diseases is that no one can visibly see what you’re going through, but the pain you feel serves as a constant reminder. This was comforting to watch, thank u OGS for bringing more awareness💜
Hi Stephanie, I have RA and a chronic autoimmune skin disorder called Hidradenitis Suppurativa which is painful, disfiguring, and debilitating. It took many years for a definitive RA diagnosis since my joints swelled up with fever in my teens. My spine is in bad shape too and I can't remember what it's like to be pain free anymore.
RA here. The only real improvement I ever had was when I took Methotrexate + Enbrel (Or another biologic). All of the other drugs were not effective or side effects made things worse. Of course the challenge is finding a doctor who will listen and being able to pay for the treatments.
As a medical student, this video was very enlightening about how people with auto immune disease conditions live and perceive life. Unfortunately I can’t allow myself to ask so many deep personal questions with the patients, it just feels like an privacy invasion. This vid really helped me understand them better and improved my ability to empathize with. Thank you so much for it!!!
Thank you for shining a light on people with invisible symptoms. I don't have autoimmune disease but as someone who suffers from a chronic illness which is also invisible to others, I resonate with the thoughts of those in the video. It's a daily struggle to look 'normal' and yet having so much pain/problems behind. I hope we can build a community where we can be kinder to one another, and have a better understanding that many people could be suffering even while looking perfectly healthy.
I suffer from a auto immune condition myself called uveitis, it's a very rare condition that affects my eyes and a chance of being blind one day. However this doesn't stop me to continue living life to the fullest like any other humans. Thank you OGS for shedding light on a sensitive topic like this 🙏
this is common condition if you suffer from Ankylosing Spondylitis a condition which i have had for over 50 years,I have had this condition for over 50 years and i have had several attacks of severe uveitis i needed steriod injections in my left eye a few years ago
This hits hard. As someone with an autoimmune disease, thank you for shedding light on this condition. It’s also nice to know that some of the emotions and thoughts I’ve had since being diagnosed are also shared by others. Feeling less alone :)
Thank you OGS for sharing this episode on Autoimmune Condition. There are more than over 100 autoimmune conditions and usually, symptoms are invisible and we are just like normal people. I was diagnosed with Sjogren Syndrome in 2016/2017. Sjogren Syndrome causes dryness of my eyes and mouth. I have not been able to produce tears naturally when I feel sad or happy. To me losing the feeling to tear upsets me most. Mainly because the urge to appropriately react to the happy or sad occasion by crying is zero and all I get is the intense pressure built up around my orbit and forehead area. I feel like a freak initially but has gradually get used to it by now. Sjogren also affects the ability to produce saliva which affects my oral health as no saliva means it cannot protect my teeth and hence causes cavities easy. I am also unable to speak long without my mouth starts to dry up and so I usually take sips of water frequently. All in all, I wanted to share my condition of Sjogren because I am like all other autoimmune patients we may look normal and well on the outside but most of the time we struggle the medical condition inside which sometimes affects our mental health being. Hopefully, with more awareness like this, the public can be more understanding and be kind to one another because you never know who u meet in the train or bus are fighting something that is not visible out front.
i also got sjogren, but thankfully mine is not as bad as yours, since i got it at a young age and got the symptoms quickly, and i really hope the best for you 💕💕 God bless you 💕💕
I suffer from Alopecia Totalis and losing my hair totally crushed my self confidence and esteem. People do not understand that even though I show no obvious symptoms or that my disease is not life-threatening, it still affects one emotionally and mentally. I now suffer from mental health conditions in addition to this autoimmune disease. Thankfully i have a bunch of best friends who stood by me all the way, helped me step out of it and accepted me for who I am. I am still paranoid that my wig would fall off or people would despise me if they knew about my condition. But i guess the first step to recovery/moving on is always self love and acceptance. To everyone struggling with an auto immune disease, hang in there. We will be ok; slowly but surely.
Hi Lydia, you can check out a korean youtuber who has a similar condition. Her name is Tweety, and she has a lot of wigs & she looks beautiful. I hope watching her will bring you some comfort & inspire you :) sending you lots of love!
Lydia! Don't be disheartened! I am sure while some might look and wonder but I strongly believe there are always many many others who knows that beauty is not all about outward appearances. U are more beautiful than some other outwardly 'beautiful' ppl whose insides are full of hate, jealousy, back stabbing, foul mouthed, plastic etc etc..
I have Graves Disease. Been suffering so many symptoms for many years but i have been just diagnosed last year. I just thought i had many allergies due to urticaria. I always wondered when i was sibgle why i needed afternoon power naps to get on for the rest of the day. I always wondered why am i tired with just so little effort? And with this exhaustion always comes pain? So many more to mention. The very sad and frustrating part other than the daily things u cannot do, when people dont understand why u need to rest because they dont see any visible symptoms. People dont understand even if y say u are in pain every single day. My heart and prayers go out to the people who have autoimmune diseases too. We hang in there. The Lord will sustain us :)
Hello. I am an autoimmune patient from Mexico City. Even though our countries are miles away from each other, the experience of being sick is very much the same. I salute all the autoimmune patients here and everywhere else in the world. We are not alone.
My ex-husband had alopecia areata. It really eats into his confidence since he drops patches of hair at one go and it's really frustrating for them to know that you are losing something vital (be it an organ function etc.) and that you'll probably die earlier than most people. I admire all of you for your grit and determination to live to your fullest!
I was diagnosed with UCTD 2 years ago and it will cause my joints to inflame anytime. Sometimes I wake up and struggle to get out of bed because the pain was so hard to bear. Thank you OGS for sharing all these amazing stories and I'm really inspired by the strength and positivity from these interviewees. To all of us who suffer from these invisible symptoms, jia you and stay strong! ❤️
Thanks for sharing and educating people about autoimmune diseases. I have mild symptoms of SLE and sometimes it’s really difficult to explain to people the invisible symptoms I suffer from. How would you explain to your boss why you look and sound normal 1 hr earlier but now bedridden cause you are feeling so fatigue and giddy? I’m grateful for my understanding boyfriend and colleagues who keep me going. To all fellow autoimmune disease patients, hang in there and be positive!
I was diagnosed with crohn's 3 yrs ago. Yes even the doc says I look well while I know I am physically challenged everyday as I hv other underlying illness like diabetes and hypertension. Thank to the Almighty my IBD is stabilised within 1 year and no relapse so far. Me too don't like to be pitied but just want to be understood with my daily struggles.
Wow. Only 500ml of water everyday... so enlightening. Thank you for sharing light on this topic. I love Ms Joanne's energy - she's so happy and cheerful that it makes me smile too! During this Ramadan when I feel hungry/thirsty when fasting, I know once the sun sets, I have plenty to eat and drink. I take it for granted sometimes... am forever grateful. I dislike the prejudice behind being honest about your illness and not being hired. Please make a video about this... I understand the employer's point-of-view and at the same time, it's difficult to put food on the table if our illnesses prevent us from getting hired.
@@Kittlyn when you feel tired and stressed due to having too many works and assignments , ditch it. Respect your body and don't do it at all. Don't let ethics and responsibility hurt you.
I was diagnosed with Rheumatoid Arthritis 14 years ago. It was a journey of learning how to listen to your body as I tend to get tired easily. Sudden attacks which are called flare. The pain one endures can be overwhelming but luckily there are some anti inflammatory medications to help reduce the pain. Hospital is like my second home cause throughout the years it has some complications that requires me to go thru physiotherapy, ophthalmology, neurology and etc. The saying life goes on, I tend to take life more relax and positive. My friends don't treat me differently we have fun. I am a single mom of 2 teenage children who keeps me busy. So life is good.
Tbh, I watched this video bc I didn't know what autoimmune diseases were. But I def learned a lot from these interviews and made you reflect on the things that we usually take for granted. I was so surprised when Aaron (the guy w/ SLE) said if he was normal, he would like to be able to drink water. I mean how often do you hear people saying, "I don't like to drink water. I prefer bbt/soda/sweetened drinks in general." Being 'normal' is actually a blessing.
I didn’t know much about auto immune diseases before this. Thanks for enlightening us with these courageous people sharing openly their struggles. Much appreciated!
As a medical practitioner, your series help me understand my patients better, thank you. Nothing beats information sharing by people who have the medical condition themselves. There's also the one about eczema, I even try share to parents who are taking care of infants and children with eczema, hoping that it helps them understand their child better as they grow up. It helps with treatment compliance.
thanks for creating this series, it really shed light on different people from different walks of life be it having autoimmune disease, or someone who had just lost a child etc. it really shed light on them and their struggles in their life and society (the discrimination they faced etc.), and also it can clear any misconceptions about them, really excited to see whenever an episode is coming out, thank you so much for creating this series!!
As a student nurse... Upon watching this video, it made me question whether I can approach these feelings of patients. I do have empathy.. but it is .. how do I say it.. very difficult to see patients like them, whereby they are questioning life and having all these negative feelings. I hate seeing people suffer and sad because most of the time diseases are never fair. During the video, there's one part which says "Should I pity you?", I mean for the rest of us who are fortunate enough to not be diagnosed with this disease... we will always have that sense of pity, its what makes us human. However.. along with that, we should practice understanding, acceptance and providing support whenever we can. Nonetheless, some of these people are really strong-minded individuals that went through so much hardship, I ought to learn this strong-willed personality from them. You guys are amazing role models! Stay strong!
I had my fair share of nurses looking after me whilst I was in hospital and I have to say that you're already amazing for wanting to be a nurse and caring for others.
This video made me feel so much better about my auto immune disease - like I’m not the only one feeling like this all the time. I suffer from multiple sclerosis and it gets harder everyday. I haven’t been able to walk normally for years and people constantly stare and give ugly looks because I’m only 22 and looks totally fine. I don’t even leave my house normally anymore because I’m embarrassed about people staring at me or judging how I walk.
That woman in glasses is so positive omg i loved listening to how she approached her situation. I have lupus too! It presented itself in the form of arthritis, so after steroids the swelling went down. I’m just on daily long-term meds, but other than that nothing has changed!
'500ml of water everyday' ... I feel so sorry to hear that, to have to live thirsty 24/7 when there is fresh water everywhere around you.... we really do take a lot of things for granted and won't know how important they are until we lose it :( glad this guy can drink as much as he want now !! :)
I actually have a friend who is suffering from a number of Autoimmune diseases. She is diagnosed with fibromyalgia, depression, Temporomandibular joint dysfunction (TMD, TMJD), migranines and irritable bowel syndrome. As a result, she cannot work and earn a living. The worst part that happen to her life is that none of her close families show their understanding, care and love to her. She told me her psychologist and psychiatrist told her the main reason why she got fibromyalgia is due to the "toxic environment" she has to endure when she stayed with her close families. She is currently staying away from them and has to live alone on rent.I hope more of her friends can care for her but it is really hard. She also shared with me how people whom she thought are her "close friends" started to block her in social media. I felt heartbroken. I hope as a society, especially in sg when we are living on a fast pace, we can pause for a moment and instead take a step forward in showing more understanding to our families and friends who are suffering from Autoimmune Diseases, because we might seriously need others to show us more understanding and care one day.
I suffer from avascular necrosis but you would never know if I don't tell you. I can somewhat relate to some of the things they go through. Be strong, stay positive and hang in there. God Bless.
Hey..Indeed, no one will be able to understand the struggles that we undergo coz we look perfectly normal. But it is okay, we know that we are strong fighters!! Continue to choose hope and stay strong!!😀
"it does not matter at least i can breathe" a reminder of an appreciation of something we all take for granted. All our problems and unhappiness is nothing, sometimes we need to understand how difficult life is for some people, and we have it good but we do not realize.
the gal with UC, autoimmune hepatitis, and OCS is really hitting hard for me in every way. I have crohn's disease, and now my doctors are speculating on the health of my liver. Her experience is definitely worse than mine, but I feel such a deep connection to what she said for everything.
Thank you from US.Invisible disease here means struggling for appropriate medical care, being told "just" exercise more, be positive, be more patient... it hurts so bad to deal with doctors. Hearing these people gives me hope there might be good doctors out there.
Yes, US here, w/psoriatic arth abd sjogrens. MD’s so arrogant/sparse I don’t attempt the 3 month waits. Have had remission w/paleoketo diet (hungarian phd )
Thankful to see awareness of autoimmune disease disorder. People with such are surely normal people, you can’t tell any different from others because we don’t pity ourselves but thankful for a positive mind and painfree day when we wake up. I have palindromic rheumatism.
What a wonderful feature highlighting people suffering some conditions that are not well understood. I was diagnosed with Myasthenia Gravis 10 years ago and Graves' Disease last year & much of the sharing here resonated with me. It can be physically tough going on certain days and/or emotionally lonely occasionally as no one around me really understands the struggle. This video feature did boost my spirits though, so a big thank you goes out to this channel for putting this together :)
As someone who suffers from Graves, I'm still grateful that I was able to do some things and enjoy my life as fully as possible. I've been so insecure since I was diagnosed but I am not alone. We are not alone and our diagnosis won't makes us less eligible of so many opportunities that this world has to offer.
Watching OGS videos always remind me to be grateful and thankful for what I have in life. The stories that are shared are always so inspiring and meaningful. I’m amazed at how strong and accomplished these people are. Please continue to share these meaningful stories & God bless.
Watching this video really brought alot of emotions in me. I was diagnosed with mixed connective disease which I have a variaty of symptoms overlapping or came along the way. Raynaud's phenomenon was my initial symptom and was diagnosed with Lupus. Slowly hashimoto and RA started to developed and raynaud's symptoms never came back. But RA is killing me everytime with the flare as it affected my daily life. Simple task like walking, sitting and getting up are so painful. Thank you OGS for this episode and allowing more people to know abt autoimmune disease. It's really a struggle dealing with invisible symptoms especially when people don't understand and thought we are finding excuses. I even have people asking me "isn't RA affecting only old people?" 🤷🏻♀️ I really hope we can have a support group for autoimmune patients to come together in SG. ❤
My fren has been suffering from an illness that the doctors cannot help. She has to live with the pain and she told me she always feel that people don't understand her pain or brush it off. The thing is that everyone has their own problems, so we can only be kind to one another. I can only hear her out and be understanding when she feels unwell. It's quite sad as a by stander, i wish i could do something. And it also teaches me to be thankful of what i already have.
Amazing video! Could relate to it on so many levels. I was diagnosed with hypothyroidism a few years back. Thankfully, I do not suffer from any physical abnormalities, but I was going through depression, massive hair loss and weight gain. But the condition is under control from medication. Great job guys.
Thanks for spreading these diseases now we better understand them♥️ Also i really hope to see people who suffer from scoliosis although it is not a disease but i went through it and even did surgery and it would be so comforting to see people who can relate to me because at times i feel alone :(
I seriously never thought that such diseases existed until I watched this video. This is indeed very insightful and brings us into the world of people with autoimmune diseases and what they go through everyday. Thank you for sharing this video and knowledge with us. Hopefully, society can learn to be more understanding and receptive of people with this kind of invisible illness.
I have Ankylosing Spondylitis (mix of both autoimmune disease and chronic inflammatory disease). I may not look like I have it but I do. Thank you for this video :D
Yes..We look perfectly alright to the outsiders ..Am sure you must be facing a lot of challenges which other have no knowledge about. It is okay, we are all strong fighters! Choose hope and stay positive!!😀
i love this series! i really appreciate the enlightenment you guys provide. i always learn something new each episode and my perspectives have definitely been expanded. & to the people in this series, thank you for being brave and strong enough to share your stories. soldier on! god bless
Random observation: Nicole looks very young. I thought she was in JC or upper secondary school. Ok, randomness aside, thank you so much for sharing with us the invisible symptoms and how they can affect your mind as well. You're all very brave and strong!
I have leaky gut..everytime i ate wrong kinds of food, or feel stressed, my body reacted violently at times..the need to grasp more air, panic attack episodes, the constant burping, brain fog.. I can no longer drive alone till today. Everytime i try, I'd get triggered again and all the said symptoms came back. I feel like I'm useless.. But i research a lot, try to fight this disease for life.. hopefully i succeed.
Thank you for making and sharing this video. My mom has had so many problems and recently almost died from Myasthenia Gravis. She is doing better. I have Graves Disease with hyperthyroidism and my daughter has some problem with bowels that we don't have answers for yet, maybe IBD, Crohn's, Colitis...I don't know - I wish they would figure it out and tell us!
'those medical researchers, when they want to find a cure, they also think about the return of investment, right?' shucks that really did hurt... kinda sad that medical companies are prioritizing profits over everything else
Hey..That is life..But it ok, though o may be the last to be considered, I am grateful that I can still live happily and those life threatening such as lupus able to survive with the new treatments 😀
Watching all these brave souls makes me feel like my "problems" are so minor... Thank you for posting it and thank you for all these brave souls, I wish them all to stay healthy and live a meaningful life.
I have Albinism, not an autoimmune disease. It is so visible that I look different yet sometimes it's invisible like an elephant in the room that no one wants to acknowledge or understand the challenges that I face
I suffered Uveitis, its an autoimmune disease of the eye that refers to any of intraocular inflammatory conditions.I was diagnosed with this illnesses back in 2020.I had to take oral steroids everyday even up till now , the doctors said that i wont be able to be fully healed as of now because the conditions were bad.But i hope people with this illness can continue stays strong 💪🏻!
I am trying my best to accept my illness despite how difficult it is for us .we may look fine to other on the outside but inside there is always constant battle .to all the fellas who have the same disease I love u all and u are not alone .We are gonna fight for our best life each day .stay strong❤
I could totally relate to the guy who suffered from Autoimmune Encephalitis, this is the first time I'm seeing a video on someone speaking about it openly. Back in 2009 (about 13 years ago) when I was diagnosed with it, it was known as "Anti-NMDA Receptor Encephalitis". When he talked about himself eating cotton-balls, back then I wore my uniform in the middle of the night and insisted I have to go to school like my usual school days, attempted to hurt myself and people around me physically. During my stay in the hospital, I slipped in and out of a coma, lost the ability to walk because I was mainly bedridden. I was forced to quit school and it was a toll for my family members and loved ones. There were many side effects from the medication that I took which included weight gain that I wasn't able to shed after all these years, short-term memory and requires a lot of reminders to keep myself on track etc. Thank you for sharing this with us, and making people like us less alone. Thank you OGS!
Thank you for making this video to create more awareness, and hopefully lead to more study on this disease. I have autoimmune hepatitis. Though, it is quite under control, I do not wish to take medicine for life but it seems to be the only option I have. Hope this can fully be cured one day.
I have psoriasis. Had it for over 20 years. Skin peels off daily. All over the floor. Skin is red. Been wearing jeans coz it's too weird with flaming red patches when wearing shorts. Cannot go shirtless either. These stories are good. Helps me know I am not the only one suffering.
A public awareness of an auto immune condition called Multiple sclerosis would have been great and uplifting. People barely know about the condition in places like India. It would have been great if such a video was uploaded so that people suffering from such conditions really didn't have to explain much about their condition in detail and annoying questions could have been evaded.
wahhh hi auntie joanne!! i really admire your positivity and your optimistic character, you have a beautiful personality so im sure a man will love you for who you are and take good care of you for life ❤️ you're an inspiration for me @ just 15 years old but i just suddenly feel happy haha, thank you!
Thank you OGS for shedding awareness on autoimmune diseases! I have one myself and I learnt a lot about those mentioned in this video! Just to share I have Graves Disease which makes my body "attack" my thyroid gland + eyes and causes hyperthyroidism. It's a lifelong condition and some people have it really severe to the point of getting their their thyroid removed, eye surgery or in rare causes this life-threatening condition called a "thyroid storm" etc. Thankfully my experience so far has been quite "mild". The thyroid affects so many functions from body temperature, metabolism, heart rate etc so you can imagine the havoc it causes when your thyroid starts producing too much hormone. Fortunately my hormone levels are currently back to normal thanks to medication but it may come back and "flare up" again any time. The only symptom I really struggle with right now is that my eyes bulge, so they are super dry all the time and can mess up my vision. People often ask stuff like "What are you staring at?" and why my eyes are so "weird" and "huge" but I try not to let these comments affect me.
Thank you for sharing. Sending you some love ❤️. Am diagnosed with this too a few years ago. Levels were stable and was off meds for a few months before symptoms relapsed and has been on daily carbi since... It affected my heart rate the most to the point I needed propranolol before carbi does it's thing.
Catch previous episodes: bit.ly/OGSCAMS4 Special thanks to Autoimmune Illness Support Group - Singapore! If you have an autoimmune disease and wish to receive support, you may consider joining their Facebook group: facebook.com/groups/1511172962475100
Thank you for this video is not easy esp when is hard for people to understand when you don't look "sick". My spouse has autoimmune disease call scleroderma aka systemic sclerosis. I hope people spread the awareness. Thanks!!
CraftySalvager Yes, it can only be managed with life-long medication. Transplant is not a cure, it is like reverting the state of the organ back to before the diseases attacked it, but I still have to take life-long medication and hope that I stay in remission. :)
5 years ago, I was diagnosed with autoimmune. I was weak and sick almost everyday. And bumps and rashes appeared all over my face randomly. My family doc sent me straight to a specialist and I was told I have autoimmune. I didn’t believe her and I was suspecting food allergy for some reason . I paid attention to my diet and I noticed i had been consuming more quantity of milk than usual. I decided to stop it, and voila, all symptoms were gone magically in the next few days
I was diagnosed with Kikuchi Fujimoto disease aka kfd last year when I was 17. It causes high fevers (38-39) and swelling of the lymph nodes(parts of the neck). The fevers are debilitating as it makes you dizzy when you stand up and your face will turn reddish and you can’t do much but rest until it subsides with the help of paracetamol. I consider myself lucky as I’ve recovered from my 2-month ish episode but may relapse in 10 years. The Doctors initially thought that I had lymphoma (cancer) but after performing the biopsy, it was found to be kfd instead.
Thanks for the video too, it is very comforting to know that I’m not alone in dealing with a debilitating condition. I understand how Nicole felt when her peer was not understanding of her condition. I had a few peers who intentionally/unintentionally called me out for not contributing enough in projects/CCA when in actual fact, I didn’t have much energy and was unable to catch up fast enough after not attending school for more than a month.
hanayid 02 Thank you for sharing! It’s a pretty tough position that we’re in, balancing our health & school while trying to fit in with our peers, especially when they don’t understand or know what we go through. Let’s still try our best, for our own sakes. :)
Specialist: “On a scale of 1-10, how much pain do you feel when you wake up from sleep”. Me: “Mm.. 4?” (Wait or is that a 5 or 6, maybe 7?) Truth is, pain is a part of our lives. We might say 4 on pain scale but the pain we feel from a 4 could very well be the same as that 10 we felt weeks ago because we’ve gotten used to it and don’t know what 4 feels like or for that matter what it feels to be pain-free. To my fellow Spoonies, you’re not alone. :) Juvenile arthritis at 9 and Ankylosing Spondylitis at 21.
I suffer from multiple autoimmune conditions - Sjögren's Syndrome, fibromyalgia, Rheumatoid Arthritis, list is endless. Lots of people go like "huh, what is that? Never heard of and you look very ok". Very hurtful because I am in pain 24x7, though I am smiling and look happy all the time. Some think Sjögren's is not life threatening, because on the surface it only dries up your natural body moisture and hits your eyes and salivary glands. But Sjögren's is a systemic autoimmune condition and can attack any organs anytime - heart, kidney, lungs and even brains. Arthritis flare ups combined with Sjögren's, Arthritis and Fibromyalgia - trust me it's "party time" for all your organs 😂 For all autoimmune sufferers, hang in there. Cherish good days and rest and sleep on bad days❤. Love and hugs
I was diagnosed with autoimmune hepatitis 3 years back but I discovered these abnormality slightly earlier then the young girl, I don't have to go through liver transplant. Ya all won't even imagine how much all of us have to go through to get the diagnosed. I went for multiple scans every 2 weeks, I went for endoscope, I had to go through liver biospy and I got poke by needles so many times that I had phobia just looking at them. I too was given these medicine that make my whole body bloated. Because of the changes of my looks I had to resign and refuse to go out, I felt so inferior at that time. The other medicines that I was given makes me lose a lot of hair that I had 2 bald spots on my head. My condition is under controlled right now and I look much better.
Thanks for watching and hope you get to learn what is autoimmune disease as when I shared with some friends, they were puzzled and ask if I have AIDS coz they associate autoimmune disease AID to AIDS..lol
"I don't really like being pitied, but I prefer being pitied rather than having my problems brushed off. Because at least if you pity me, it means you feel sympathy for me. So you understand that I am going through something that is a bit bigger than what other kids my age go through."
I love her maturity and depth :')
C Thank you for the kind comment!!!
@@nic233 are you the one in the video? Well hang in there mate, because we all facing the same problem for our entire life, the thing that help us the most are just be grateful and keep on taking prescription 🙂
Muhammad Hilman Hakim Yes, that’s me in the video. Thanks for the encouragement :)
@@nic233 i am a sle patient with kidney transplant too. . I do share same thought with u. I also hope my boss and my colleagues can be more emphaty on ms
@@guilinggaoyeh4691 Please turn to Jesus He loves you very much, i was ill for many years but the doctors couldn't really help me, i don't blame them, there was only so much that they could of done for me, Then Jesus gave me a miracle and healed me, He is the God of miracles, God has done amazing things in my life and in the life's of people i know, He can do the same for you and yours, When you need Him call on Him, He is the God of comfort and will there for you when you call on Him, The bible tells us in Romans 10:13 For whosoever shall call upon the name of the Lord shall be saved, God saved someone i love from an illness leading to death, There is nothing impossible to God, It's as simple as asking Jesus into your heart and life to be your personal Lord and Saviour, confess your sins to Jesus, and Jesus will for give you, If you truly seek Him, Jesus will answer you, i know this because He answered me when i called out to Him
Sometimes I re-watched a lot of these "Can Ask Meh?" videos to reflect on my life and be thankful for many things that I take for granted
yes. this is what I am doing right now.......
same
Having autoimmune disease makes it a daily mental struggle against feelings of inadequacy and envy toward peers. So glad to be able to have some light shed on such conditions! Thank you :)
Thank you so much for sharing! Kids can be cruel sometimes. I'm sorry you had to deal with someone so insensitive. I hope you meet better team mates in the future.
I suspect you're way more mature than most of your peers. As you grow older I think you'll discover more people who are understanding of your condition. And it's never fair to compare yourself to others... just remember that you're your own person!
Yes, and the 40 year old project manager says it best, he accepted the effect his condition had on him. But more importantly others did too.
Joanne is such a sweet lady. I love how cheery she is and her desire to help the less fortunate. 😭
Hey.. Thanks for your sweet and encouragingcomments 😀
Zuoann Chan you are so kind💞💗💕💓
@@slekdidwbfi8692 thank you😀
@@zuoannchan7415 may I know which religion that you get into? I am thinking to learn religion too for myself, to learn life and appreciate it, I think I really need that =)
@@zuoannchan7415 hi may I know if you can advise which religion that you are with? =)
Surprised yet happy to see that you chose a male representative for SLE. Since this is already a rare disease and it's more commonly seen on female than male, it could be even harder for guys to accept and get through it. Full respect for standing up and speaking for the rare of the rare.
Thanks for giving us autoimmune illness sufferers some air time... Hopefully this goes towards building more awareness.
You are very capable! Fighting!!
Franz See don’t give up
No, thank you for sharing with us. Take care Mr See.
No one is talking about diet, stress, nutrition, sleep, regular exercise, microbiome-??
Very very mature answers. “I rather you pity me than brush me off....”. Hugs love and God bless you all greatly
Jeanne Wong Thank you :)
I have hashimoto disease. Since young I had goitre and it did affect my physical appearance. The turning point came , when I wanted to settle down but could not find any suitable partners. Years passed and I met my husband who is a medical practitioner. He understood my condition , accepted me and took really good care of me especially when I was pregnant. I feel blessed.
Joanne is so positive and I see myself in her. You just have to keep going and yes! we are no less capable than any normal person. In fact , most of us are better. It is all in your mind.
Stay strong!! Disease does not define us, you are your own person❤️
@@nic233 precisely!
Hey. I am so happy for you. Yes.. Let's continue to keep our spirits high!!' choose hope😍
@@zuoannchan7415 thanks for commenting. It was great knowing your story.
@@nic233 Nicole it was great knowing your story 😊👍
Auntie Joanne, I like your cheerfulness. I hope you find someone who loves you for who you are soon. Perhaps, you can volunteer to give tuition to low income students in our own homeland.
Thank you Precious..Yea..Am sure I will meet him soon!!😍
Thank you OGS for providing this platform for allowing our voices to be heard.I believe not many know what autoimmune disease is all about. I hope I can play my part in creating awareness that we may be the rare, the silent suffers but we are the strong fighters! Life can be beautiful for everyone, appreciate/cherish what you have.
Up to this point i never thought I'll see someone suffering so much yet still very bright..😭
hi I am also suffering from Myasthenia Gravis and I got diagnosed when I was 18. I am 19 this year. I wanted to ask if the surgery has significantly improved the symptoms and how long did it take to feel the effect. Even though I am on medication I still face some symptoms like difficulty talking and some days it just gets really bad. I am hoping to get this surgery done in July
Thank you for being such an inspiration @Zuoann Chan. You make me realize that there is a silver lining to every cloud, and that there are so many things to be thankful for in life. Even though you have been going through so many difficulties, you stand strong and shine bright as a star to inspire others about the beauty of life. I really truly hope that you achieve every goal and happiness in life. Thank you 💖
Joanne I really like your attitude 😊 hope your find your happiness soon.♥️♥️
as someone who suffers from myasthenia gravis as well, im really thankful that you took this opportunity to speak up and spread awareness for us. i relate to you so much because i also had my surgery done after multiple iv drips and took medications. i wish i could be like you, cheerful and optimistic. sometimes i hoped i passed away during my surgery like how i almost did in the icu. but after watching this, i gained hope. thank you so much.
people don’t realize how much auto immune diseases affects a human, i admire these people in the video where theyve gone through their stages of grief, i haven’t been able to get out of my one year long denial phase
I wish all autoimmune disease patients and survivors would always live well and happily 😊
This was a great episode! I was diagnosed with Rheumatoid Arthritis 7 years ago - shoutout to RA people :) And no, it is not Osteoarthritis, they are NOT the same thing. The answers by these brave people really resonated, I'm glad there are more awareness about autoimmune diseases.
Me too, but I’m diagnosed as seronegative RA this year. How do you control it? Does diet helps?
This episode is not just about autoimmune diseases. It’s about life, and being a better human. Thank you for your sharings! 🙏🏻🙏🏻🙏🏻
"You look normal, are you really sick?"
The saddest question one could ask a person suffering from an autoimmune disease.
I myself an ITP patient can confirm that.
I feel like breaking people's faces when they ask that or comment about my facial hair/hair loss/weight gain due to medications.
Be kind to people. You never know what they are going through.🙂
I received a chronic illness diagnosis recently, and this was so comforting, especially the words shared by the man in the navy shirt with the plus signs on it...I feel less alone after watching this.
Andy S Stay strong!!! Yes you are not alone in this❤️
"I feel like everyone thinks having a transplant is a cure-all but they don't realised that a transplant is the option the doctor only gives when you've reached end-stage. Like when it is really bad enough that nothing else will work."
I can relate to this on so many levels. I do not have any autoimmune disease but my cornea was seriously infected and was under treatments for 2 years. My cornea right now is perfectly free from infection, but there is a scar on my cornea that has blurred my vision. The hope that doctor gave during previous sessions crushed during the last check up as the doctor said there is nothing else they can do and advice me to go for a cornea transplant. I was stunned and my mind went blank as I recalled when I was first diagnosed with this, my doctor has listed out several treatments and it expected result, with a slight chance of worst case scenario, which is to go for transplant for it to just HAVE A CHANCE to be fully recovered. Can you imagine how scary is that when the worst case scenario that you have worked hard to try to avoid from it has became your only option right now?
Yes, transplant is a life-changing experience. It was really scary to have to get through, and I remember being terrified and afraid of what would happen afterwards. Let’s stay strong together!
I was diagnosed with Crohn’s Disease when I was 14. Having an automimmune disease really takes a toll on your mental health, and it’s a long journey till they actually find a drug that will help to keep your symptoms under control (remission period). It took me 5 years till things have stabilised that i’m actually not relapsing anymore (21 y/o now). Multiple times during flare-ups I questioned myself why did it have to be me and also thought of dying regularly (the stomach cramps were insane and I run to the toilet 7-8 times a day), but on the outside nobody knows what I’m going through hahaha I just look like a lazy person who falls asleep more in class (chronic fatigue from diarrhoea). Now I’m in a happy relationship and my illness is quite well-controlled and I’m glad that my partner accepts me for who I am. I’ve voiced to him multiple worries of what if I flare up next time cos honestly for us ppl with these diseases we never know when it will strike again and that i’ll be such of a burden hahahah. Oh wells just living in the present right now, glad that life has been good to me for the past 2 years. Thank you for shedding light on people with these diseases because we just suffer so silently and people just brush it off as us being lazy :’) For others out there with autoimmune diseases jiayous❤️
Ahh I feel you. I was diagnosed with Crohns a few weeks ago. After initially being diagnosed with ulcerative colitis last June. But they can't switch my medication to something that I actually need to be on, because of coronavirus...
I knew it was a condition that affected the guts but I had no idea how the inflammation would affect my energy levels, my muscles, my brain...
It does get you down sometimes. Especially when family members and friends try and brush it off or suddenly become experts.
Victoria Cariad it affected my energy levels sooo badly :’) Is the drug that you are supposed to be on Infliximab or other biologics? For me infliximab was really a life-saver! I’ve gained enough weight to be a healthy weight now and my fatigue isn’t as bad as last time already. I understand that it’s an immunosuppresant though which may make us more compromised to covid19 but from what I read we aren’t more susceptible compared to normal people, just that if we happen to catch the virus we may get more severely affected. Highly recommend biologics although it’s more costly!! You can try talking to your doctor about it if other drugs don’t seem to be working for you :) all the best and stay safe during this period!!❤️
I have had an autoimmune disease for over 50 years ankylosing spondylitis also had had bouts of inflmeitory bowel disease and sin problems yes these diseases are awful with no definate cures I am now 72 but had long periods of unemployment sickness and poverty
I can relate, I have Crohn’s too ❤️
rheumatoid arthritis gang gang anyone? I was diagnosed 2 years ago. The thing about autoimmune diseases is that no one can visibly see what you’re going through, but the pain you feel serves as a constant reminder.
This was comforting to watch, thank u OGS for bringing more awareness💜
Hi Stephanie, I have RA and a chronic autoimmune skin disorder called Hidradenitis Suppurativa which is painful, disfiguring, and debilitating. It took many years for a definitive RA diagnosis since my joints swelled up with fever in my teens. My spine is in bad shape too and I can't remember what it's like to be pain free anymore.
RA here. The only real improvement I ever had was when I took Methotrexate + Enbrel (Or another biologic). All of the other drugs were not effective or side effects made things worse. Of course the challenge is finding a doctor who will listen and being able to pay for the treatments.
Im diagnosed with seronegative RA just this year. Does diet help?
I really wish I could know someone like Joanne. She seems like such a lovely and kind person to hang out with.
As a medical student, this video was very enlightening about how people with auto immune disease conditions live and perceive life. Unfortunately I can’t allow myself to ask so many deep personal questions with the patients, it just feels like an privacy invasion.
This vid really helped me understand them better and improved my ability to empathize with. Thank you so much for it!!!
I hope you will share this link with your md and rheumie associates!
Thank you for shining a light on people with invisible symptoms. I don't have autoimmune disease but as someone who suffers from a chronic illness which is also invisible to others, I resonate with the thoughts of those in the video. It's a daily struggle to look 'normal' and yet having so much pain/problems behind. I hope we can build a community where we can be kinder to one another, and have a better understanding that many people could be suffering even while looking perfectly healthy.
Stay strong!
I suffer from a auto immune condition myself called uveitis, it's a very rare condition that affects my eyes and a chance of being blind one day. However this doesn't stop me to continue living life to the fullest like any other humans. Thank you OGS for shedding light on a sensitive topic like this 🙏
Hey..I can feel you as I have advanced glaucoma due to the side effects of the high dosage of steroids.
Continue to choose hope and stay positive 😀
this is common condition if you suffer from Ankylosing Spondylitis a condition which i have had for over 50 years,I have had this condition for over 50 years and i have had several attacks of severe uveitis i needed steriod injections in my left eye a few years ago
This hits hard. As someone with an autoimmune disease, thank you for shedding light on this condition. It’s also nice to know that some of the emotions and thoughts I’ve had since being diagnosed are also shared by others. Feeling less alone :)
Thank you OGS for sharing this episode on Autoimmune Condition. There are more than over 100 autoimmune conditions and usually, symptoms are invisible and we are just like normal people. I was diagnosed with Sjogren Syndrome in 2016/2017. Sjogren Syndrome causes dryness of my eyes and mouth. I have not been able to produce tears naturally when I feel sad or happy. To me losing the feeling to tear upsets me most. Mainly because the urge to appropriately react to the happy or sad occasion by crying is zero and all I get is the intense pressure built up around my orbit and forehead area. I feel like a freak initially but has gradually get used to it by now. Sjogren also affects the ability to produce saliva which affects my oral health as no saliva means it cannot protect my teeth and hence causes cavities easy. I am also unable to speak long without my mouth starts to dry up and so I usually take sips of water frequently.
All in all, I wanted to share my condition of Sjogren because I am like all other autoimmune patients we may look normal and well on the outside but most of the time we struggle the medical condition inside which sometimes affects our mental health being. Hopefully, with more awareness like this, the public can be more understanding and be kind to one another because you never know who u meet in the train or bus are fighting something that is not visible out front.
i also got sjogren, but thankfully mine is not as bad as yours, since i got it at a young age and got the symptoms quickly, and i really hope the best for you 💕💕 God bless you 💕💕
I have SS and Psoriatic Arthritis. I wish I wasn’t allergic to zylitol, which helps produce saliva.
I suffer from Alopecia Totalis and losing my hair totally crushed my self confidence and esteem. People do not understand that even though I show no obvious symptoms or that my disease is not life-threatening, it still affects one emotionally and mentally. I now suffer from mental health conditions in addition to this autoimmune disease. Thankfully i have a bunch of best friends who stood by me all the way, helped me step out of it and accepted me for who I am. I am still paranoid that my wig would fall off or people would despise me if they knew about my condition. But i guess the first step to recovery/moving on is always self love and acceptance.
To everyone struggling with an auto immune disease, hang in there. We will be ok; slowly but surely.
Sending you love! 🥰
Hi Lydia, you can check out a korean youtuber who has a similar condition. Her name is Tweety, and she has a lot of wigs & she looks beautiful. I hope watching her will bring you some comfort & inspire you :) sending you lots of love!
Lydia! Don't be disheartened! I am sure while some might look and wonder but I strongly believe there are always many many others who knows that beauty is not all about outward appearances. U are more beautiful than some other outwardly 'beautiful' ppl whose insides are full of hate, jealousy, back stabbing, foul mouthed, plastic etc etc..
I have Graves Disease. Been suffering so many symptoms for many years but i have been just diagnosed last year. I just thought i had many allergies due to urticaria. I always wondered when i was sibgle why i needed afternoon power naps to get on for the rest of the day. I always wondered why am i tired with just so little effort? And with this exhaustion always comes pain? So many more to mention.
The very sad and frustrating part other than the daily things u cannot do, when people dont understand why u need to rest because they dont see any visible symptoms. People dont understand even if y say u are in pain every single day.
My heart and prayers go out to the people who have autoimmune diseases too. We hang in there. The Lord will sustain us :)
Hello. I am an autoimmune patient from Mexico City. Even though our countries are miles away from each other, the experience of being sick is very much the same. I salute all the autoimmune patients here and everywhere else in the world. We are not alone.
My ex-husband had alopecia areata. It really eats into his confidence since he drops patches of hair at one go and it's really frustrating for them to know that you are losing something vital (be it an organ function etc.) and that you'll probably die earlier than most people. I admire all of you for your grit and determination to live to your fullest!
I was diagnosed with UCTD 2 years ago and it will cause my joints to inflame anytime. Sometimes I wake up and struggle to get out of bed because the pain was so hard to bear. Thank you OGS for sharing all these amazing stories and I'm really inspired by the strength and positivity from these interviewees. To all of us who suffer from these invisible symptoms, jia you and stay strong! ❤️
Thanks for sharing and educating people about autoimmune diseases. I have mild symptoms of SLE and sometimes it’s really difficult to explain to people the invisible symptoms I suffer from. How would you explain to your boss why you look and sound normal 1 hr earlier but now bedridden cause you are feeling so fatigue and giddy? I’m grateful for my understanding boyfriend and colleagues who keep me going. To all fellow autoimmune disease patients, hang in there and be positive!
I was diagnosed with crohn's 3 yrs ago. Yes even the doc says I look well while I know I am physically challenged everyday as I hv other underlying illness like diabetes and hypertension. Thank to the Almighty my IBD is stabilised within 1 year and no relapse so far. Me too don't like to be pitied but just want to be understood with my daily struggles.
Wow. Only 500ml of water everyday... so enlightening. Thank you for sharing light on this topic. I love Ms Joanne's energy - she's so happy and cheerful that it makes me smile too!
During this Ramadan when I feel hungry/thirsty when fasting, I know once the sun sets, I have plenty to eat and drink. I take it for granted sometimes... am forever grateful.
I dislike the prejudice behind being honest about your illness and not being hired. Please make a video about this... I understand the employer's point-of-view and at the same time, it's difficult to put food on the table if our illnesses prevent us from getting hired.
Thank you so much for your sweet and encouraging comments
When you feel thirsty just drink !!!! Don’t let religion hurt you. Its very important, just respect your body and DRINK!
@@Kittlyn when you feel tired and stressed due to having too many works and assignments , ditch it. Respect your body and don't do it at all. Don't let ethics and responsibility hurt you.
I was diagnosed with Rheumatoid Arthritis 14 years ago. It was a journey of learning how to listen to your body as I tend to get tired easily. Sudden attacks which are called flare. The pain one endures can be overwhelming but luckily there are some anti inflammatory medications to help reduce the pain. Hospital is like my second home cause throughout the years it has some complications that requires me to go thru physiotherapy, ophthalmology, neurology and etc. The saying life goes on, I tend to take life more relax and positive. My friends don't treat me differently we have fun. I am a single mom of 2 teenage children who keeps me busy. So life is good.
@andylau, how so? Mind to share some tips.
I didn't expect that this video will make me cry. It does but thank you as you let me understand these people more.
Tbh, I watched this video bc I didn't know what autoimmune diseases were. But I def learned a lot from these interviews and made you reflect on the things that we usually take for granted. I was so surprised when Aaron (the guy w/ SLE) said if he was normal, he would like to be able to drink water. I mean how often do you hear people saying, "I don't like to drink water. I prefer bbt/soda/sweetened drinks in general." Being 'normal' is actually a blessing.
I didn’t know much about auto immune diseases before this. Thanks for enlightening us with these courageous people sharing openly their struggles. Much appreciated!
As a medical practitioner, your series help me understand my patients better, thank you. Nothing beats information sharing by people who have the medical condition themselves.
There's also the one about eczema, I even try share to parents who are taking care of infants and children with eczema, hoping that it helps them understand their child better as they grow up. It helps with treatment compliance.
thanks for creating this series, it really shed light on different people from different walks of life be it having autoimmune disease, or someone who had just lost a child etc. it really shed light on them and their struggles in their life and society (the discrimination they faced etc.), and also it can clear any misconceptions about them, really excited to see whenever an episode is coming out, thank you so much for creating this series!!
Thank you for your constant support!
As a student nurse... Upon watching this video, it made me question whether I can approach these feelings of patients. I do have empathy.. but it is .. how do I say it.. very difficult to see patients like them, whereby they are questioning life and having all these negative feelings. I hate seeing people suffer and sad because most of the time diseases are never fair.
During the video, there's one part which says "Should I pity you?", I mean for the rest of us who are fortunate enough to not be diagnosed with this disease... we will always have that sense of pity, its what makes us human. However.. along with that, we should practice understanding, acceptance and providing support whenever we can.
Nonetheless, some of these people are really strong-minded individuals that went through so much hardship, I ought to learn this strong-willed personality from them. You guys are amazing role models! Stay strong!
I had my fair share of nurses looking after me whilst I was in hospital and I have to say that you're already amazing for wanting to be a nurse and caring for others.
This video made me feel so much better about my auto immune disease - like I’m not the only one feeling like this all the time. I suffer from multiple sclerosis and it gets harder everyday. I haven’t been able to walk normally for years and people constantly stare and give ugly looks because I’m only 22 and looks totally fine. I don’t even leave my house normally anymore because I’m embarrassed about people staring at me or judging how I walk.
That woman in glasses is so positive omg i loved listening to how she approached her situation. I have lupus too! It presented itself in the form of arthritis, so after steroids the swelling went down. I’m just on daily long-term meds, but other than that nothing has changed!
'500ml of water everyday' ... I feel so sorry to hear that, to have to live thirsty 24/7 when there is fresh water everywhere around you....
we really do take a lot of things for granted and won't know how important they are until we lose it :(
glad this guy can drink as much as he want now !! :)
I actually have a friend who is suffering from a number of Autoimmune diseases. She is diagnosed with fibromyalgia, depression, Temporomandibular joint dysfunction (TMD, TMJD), migranines and irritable bowel syndrome. As a result, she cannot work and earn a living. The worst part that happen to her life is that none of her close families show their understanding, care and love to her. She told me her psychologist and psychiatrist told her the main reason why she got fibromyalgia is due to the "toxic environment" she has to endure when she stayed with her close families. She is currently staying away from them and has to live alone on rent.I hope more of her friends can care for her but it is really hard. She also shared with me how people whom she thought are her "close friends" started to block her in social media. I felt heartbroken. I hope as a society, especially in sg when we are living on a fast pace, we can pause for a moment and instead take a step forward in showing more understanding to our families and friends who are suffering from Autoimmune Diseases, because we might seriously need others to show us more understanding and care one day.
Nicole is so mature for her age. I'm a similar age and wish there were more people like her my age.
Lizzie P Thank you :)
Thank you for touching on this issue💕 don’t really see this being spoken about in Singapore
Indeed, hence, I am.so grateful that there is such a platform for the rare to be heard and also.to create such awareness to the public 😀
I suffer from avascular necrosis but you would never know if I don't tell you. I can somewhat relate to some of the things they go through. Be strong, stay positive and hang in there. God Bless.
Hey..Indeed, no one will be able to understand the struggles that we undergo coz we look perfectly normal.
But it is okay, we know that we are strong fighters!!
Continue to choose hope and stay strong!!😀
"it does not matter at least i can breathe" a reminder of an appreciation of something we all take for granted. All our problems and unhappiness is nothing, sometimes we need to understand how difficult life is for some people, and we have it good but we do not realize.
the gal with UC, autoimmune hepatitis, and OCS is really hitting hard for me in every way. I have crohn's disease, and now my doctors are speculating on the health of my liver. Her experience is definitely worse than mine, but I feel such a deep connection to what she said for everything.
Thank you from US.Invisible disease here means struggling for appropriate medical care, being told "just" exercise more, be positive, be more patient... it hurts so bad to deal with doctors. Hearing these people gives me hope there might be good doctors out there.
Yes, US here, w/psoriatic arth abd sjogrens. MD’s so arrogant/sparse I don’t attempt the 3 month waits.
Have had remission w/paleoketo diet (hungarian phd )
Thankful to see awareness of autoimmune disease disorder. People with such are surely normal people, you can’t tell any different from others because we don’t pity ourselves but thankful for a positive mind and painfree day when we wake up. I have palindromic rheumatism.
Hey. Guess you have your story of your own struggles!!
Please continue to stay strong and choose hope!!😀
@ourgrandfatherstory thank you so much for giving these people a voice and encouraging empathy in our society :)
What a wonderful feature highlighting people suffering some conditions that are not well understood. I was diagnosed with Myasthenia Gravis 10 years ago and Graves' Disease last year & much of the sharing here resonated with me. It can be physically tough going on certain days and/or emotionally lonely occasionally as no one around me really understands the struggle. This video feature did boost my spirits though, so a big thank you goes out to this channel for putting this together :)
I have graves too! sending you love
As someone who suffers from Graves, I'm still grateful that I was able to do some things and enjoy my life as fully as possible. I've been so insecure since I was diagnosed but I am not alone. We are not alone and our diagnosis won't makes us less eligible of so many opportunities that this world has to offer.
Watching OGS videos always remind me to be grateful and thankful for what I have in life. The stories that are shared are always so inspiring and meaningful. I’m amazed at how strong and accomplished these people are. Please continue to share these meaningful stories & God bless.
Watching this video really brought alot of emotions in me.
I was diagnosed with mixed connective disease which I have a variaty of symptoms overlapping or came along the way. Raynaud's phenomenon was my initial symptom and was diagnosed with Lupus. Slowly hashimoto and RA started to developed and raynaud's symptoms never came back. But RA is killing me everytime with the flare as it affected my daily life. Simple task like walking, sitting and getting up are so painful.
Thank you OGS for this episode and allowing more people to know abt autoimmune disease. It's really a struggle dealing with invisible symptoms especially when people don't understand and thought we are finding excuses.
I even have people asking me "isn't RA affecting only old people?" 🤷🏻♀️
I really hope we can have a support group for autoimmune patients to come together in SG. ❤
My fren has been suffering from an illness that the doctors cannot help. She has to live with the pain and she told me she always feel that people don't understand her pain or brush it off. The thing is that everyone has their own problems, so we can only be kind to one another.
I can only hear her out and be understanding when she feels unwell. It's quite sad as a by stander, i wish i could do something. And it also teaches me to be thankful of what i already have.
Amazing video! Could relate to it on so many levels. I was diagnosed with hypothyroidism a few years back. Thankfully, I do not suffer from any physical abnormalities, but I was going through depression, massive hair loss and weight gain. But the condition is under control from medication. Great job guys.
You should do one for deaf people! I'm a deaf person and I feel that there's not much understanding on being deaf in Singapore. :)
Thanks for spreading these diseases now we better understand them♥️
Also i really hope to see people who suffer from scoliosis although it is not a disease but i went through it and even did surgery and it would be so comforting to see people who can relate to me because at times i feel alone :(
Hey. You are definitely not alone .
You must have your own story of person struggles..
Please continue to stay strong and choose hope😀
we are alive. we are breathing on our own. that itself is enough to be celebrated.
I seriously never thought that such diseases existed until I watched this video. This is indeed very insightful and brings us into the world of people with autoimmune diseases and what they go through everyday. Thank you for sharing this video and knowledge with us. Hopefully, society can learn to be more understanding and receptive of people with this kind of invisible illness.
I have Ankylosing Spondylitis (mix of both autoimmune disease and chronic inflammatory disease). I may not look like I have it but I do.
Thank you for this video :D
I have this too as well, i understood the struggle when there is a relapse. Lets jiayou!
Stay strong!!!!
Yes..We look perfectly alright to the outsiders ..Am sure you must be facing a lot of challenges which other have no knowledge about.
It is okay, we are all strong fighters!
Choose hope and stay positive!!😀
I've had AS too since I was 9, have learned to manage over the years. stay strong :)
i love this series! i really appreciate the enlightenment you guys provide. i always learn something new each episode and my perspectives have definitely been expanded. & to the people in this series, thank you for being brave and strong enough to share your stories. soldier on! god bless
Do look forward to our Extra Cuts - Do You Feel Like a Burden? on 2 May, 6.30pm 😉
Link: ruclips.net/video/kz50VhVrs_M/видео.html
Random observation: Nicole looks very young. I thought she was in JC or upper secondary school. Ok, randomness aside, thank you so much for sharing with us the invisible symptoms and how they can affect your mind as well. You're all very brave and strong!
I have leaky gut..everytime i ate wrong kinds of food, or feel stressed, my body reacted violently at times..the need to grasp more air, panic attack episodes, the constant burping, brain fog.. I can no longer drive alone till today. Everytime i try, I'd get triggered again and all the said symptoms came back. I feel like I'm useless..
But i research a lot, try to fight this disease for life.. hopefully i succeed.
Thank you for making and sharing this video. My mom has had so many problems and recently almost died from Myasthenia Gravis. She is doing better. I have Graves Disease with hyperthyroidism and my daughter has some problem with bowels that we don't have answers for yet, maybe IBD, Crohn's, Colitis...I don't know - I wish they would figure it out and tell us!
'those medical researchers, when they want to find a cure, they also think about the return of investment, right?' shucks that really did hurt... kinda sad that medical companies are prioritizing profits over everything else
Very true..U see now the covid? Everyone is racing to get a cure cos economy is v v much affected..
Hey..That is life..But it ok, though o may be the last to be considered, I am grateful that I can still live happily and those life threatening such as lupus able to survive with the new treatments 😀
Medicine also expensive unfortunately 😢
I am one of them too and this video is really an inspiration to me and many others! Thank you!!! Stay strong 💚💚
3:45 feeling this rn
9:08 but i love her optimism
14:03 exactly how i feel
Jia you Phoebe! As Franz said, you are not alone💪
I have MS and I feel so misunderstood. Thanks for making this.
Watching all these brave souls makes me feel like my "problems" are so minor... Thank you for posting it and thank you for all these brave souls, I wish them all to stay healthy and live a meaningful life.
Now, I deeply feel that I should not be complaining anymore. I am already blessed enough to be healthy. Should not take health for granted.
remind your beloved ones to hydrate with each day bathing/steaming with natural soap.
I have Albinism, not an autoimmune disease. It is so visible that I look different yet sometimes it's invisible like an elephant in the room that no one wants to acknowledge or understand the challenges that I face
I suffered Uveitis, its an autoimmune disease of the eye that refers to any of intraocular inflammatory conditions.I was diagnosed with this illnesses back in 2020.I had to take oral steroids everyday even up till now , the doctors said that i wont be able to be fully healed as of now because the conditions were bad.But i hope people with this illness can continue stays strong 💪🏻!
their positivity is their strength
Thank you for this episode. Shoutout to those suffering from Pemphigus Vulgaris. Hope everyone’s conditions are controlled!
I am trying my best to accept my illness despite how difficult it is for us .we may look fine to other on the outside but inside there is always constant battle .to all the fellas who have the same disease I love u all and u are not alone .We are gonna fight for our best life each day .stay strong❤
I could totally relate to the guy who suffered from Autoimmune Encephalitis, this is the first time I'm seeing a video on someone speaking about it openly. Back in 2009 (about 13 years ago) when I was diagnosed with it, it was known as "Anti-NMDA Receptor Encephalitis". When he talked about himself eating cotton-balls, back then I wore my uniform in the middle of the night and insisted I have to go to school like my usual school days, attempted to hurt myself and people around me physically. During my stay in the hospital, I slipped in and out of a coma, lost the ability to walk because I was mainly bedridden. I was forced to quit school and it was a toll for my family members and loved ones. There were many side effects from the medication that I took which included weight gain that I wasn't able to shed after all these years, short-term memory and requires a lot of reminders to keep myself on track etc.
Thank you for sharing this with us, and making people like us less alone. Thank you OGS!
Thank you for making this video to create more awareness, and hopefully lead to more study on this disease.
I have autoimmune hepatitis. Though, it is quite under control, I do not wish to take medicine for life but it seems to be the only option I have. Hope this can fully be cured one day.
Autoimmune disorders are such a pain! It's nice to hear about other people's stories though. I've also been documenting my journey on my channel.
I have psoriasis. Had it for over 20 years. Skin peels off daily. All over the floor. Skin is red. Been wearing jeans coz it's too weird with flaming red patches when wearing shorts. Cannot go shirtless either. These stories are good. Helps me know I am not the only one suffering.
A public awareness of an auto immune condition called Multiple sclerosis would have been great and uplifting. People barely know about the condition in places like India. It would have been great if such a video was uploaded so that people suffering from such conditions really didn't have to explain much about their condition in detail and annoying questions could have been evaded.
True ❤️
wahhh hi auntie joanne!! i really admire your positivity and your optimistic character, you have a beautiful personality so im sure a man will love you for who you are and take good care of you for life ❤️ you're an inspiration for me @ just 15 years old but i just suddenly feel happy haha, thank you!
Thank you OGS for shedding awareness on autoimmune diseases! I have one myself and I learnt a lot about those mentioned in this video!
Just to share I have Graves Disease which makes my body "attack" my thyroid gland + eyes and causes hyperthyroidism. It's a lifelong condition and some people have it really severe to the point of getting their their thyroid removed, eye surgery or in rare causes this life-threatening condition called a "thyroid storm" etc. Thankfully my experience so far has been quite "mild".
The thyroid affects so many functions from body temperature, metabolism, heart rate etc so you can imagine the havoc it causes when your thyroid starts producing too much hormone. Fortunately my hormone levels are currently back to normal thanks to medication but it may come back and "flare up" again any time. The only symptom I really struggle with right now is that my eyes bulge, so they are super dry all the time and can mess up my vision. People often ask stuff like "What are you staring at?" and why my eyes are so "weird" and "huge" but I try not to let these comments affect me.
Thank you for sharing. Sending you some love ❤️. Am diagnosed with this too a few years ago. Levels were stable and was off meds for a few months before symptoms relapsed and has been on daily carbi since... It affected my heart rate the most to the point I needed propranolol before carbi does it's thing.
Catch previous episodes: bit.ly/OGSCAMS4
Special thanks to Autoimmune Illness Support Group - Singapore! If you have an autoimmune disease and wish to receive support, you may consider joining their Facebook group: facebook.com/groups/1511172962475100
I was never accepted into the grp till date. I'll cancel request and try again
Thank you for this video is not easy esp when is hard for people to understand when you don't look "sick". My spouse has autoimmune disease call scleroderma aka systemic sclerosis. I hope people spread the awareness. Thanks!!
Hoshimoto's Disease is an autoimmune disease where antibodies attack the thyroid. Thank you for your inspirational video.
To my understanding, most autoimmune disease has no cure. It can only be managed.
CraftySalvager Yes, it can only be managed with life-long medication. Transplant is not a cure, it is like reverting the state of the organ back to before the diseases attacked it, but I still have to take life-long medication and hope that I stay in remission. :)
I wish all the people struggling with an autoimmune disease strength and a positive mindset! ❤
5 years ago, I was diagnosed with autoimmune. I was weak and sick almost everyday. And bumps and rashes appeared all over my face randomly. My family doc sent me straight to a specialist and I was told I have autoimmune. I didn’t believe her and I was suspecting food allergy for some reason . I paid attention to my diet and I noticed i had been consuming more quantity of milk than usual. I decided to stop it, and voila, all symptoms were gone magically in the next few days
I was diagnosed with Kikuchi Fujimoto disease aka kfd last year when I was 17. It causes high fevers (38-39) and swelling of the lymph nodes(parts of the neck). The fevers are debilitating as it makes you dizzy when you stand up and your face will turn reddish and you can’t do much but rest until it subsides with the help of paracetamol.
I consider myself lucky as I’ve recovered from my 2-month ish episode but may relapse in 10 years. The Doctors initially thought that I had lymphoma (cancer) but after performing the biopsy, it was found to be kfd instead.
Thanks for the video too, it is very comforting to know that I’m not alone in dealing with a debilitating condition. I understand how Nicole felt when her peer was not understanding of her condition. I had a few peers who intentionally/unintentionally called me out for not contributing enough in projects/CCA when in actual fact, I didn’t have much energy and was unable to catch up fast enough after not attending school for more than a month.
hanayid 02 Thank you for sharing! It’s a pretty tough position that we’re in, balancing our health & school while trying to fit in with our peers, especially when they don’t understand or know what we go through. Let’s still try our best, for our own sakes. :)
Specialist: “On a scale of 1-10, how much pain do you feel when you wake up from sleep”.
Me: “Mm.. 4?” (Wait or is that a 5 or 6, maybe 7?)
Truth is, pain is a part of our lives. We might say 4 on pain scale but the pain we feel from a 4 could very well be the same as that 10 we felt weeks ago because we’ve gotten used to it and don’t know what 4 feels like or for that matter what it feels to be pain-free.
To my fellow Spoonies, you’re not alone. :)
Juvenile arthritis at 9 and Ankylosing Spondylitis at 21.
I suffer from multiple autoimmune conditions - Sjögren's Syndrome, fibromyalgia, Rheumatoid Arthritis, list is endless. Lots of people go like "huh, what is that? Never heard of and you look very ok". Very hurtful because I am in pain 24x7, though I am smiling and look happy all the time. Some
think Sjögren's is not life threatening, because on the surface it only dries up your natural body moisture and hits your eyes and salivary glands. But Sjögren's is a systemic autoimmune condition and can attack any organs anytime - heart, kidney, lungs and even brains. Arthritis flare ups combined with Sjögren's, Arthritis and Fibromyalgia - trust me it's "party time" for all your organs 😂
For all autoimmune sufferers, hang in there. Cherish good days and rest and sleep on bad days❤. Love and hugs
I was diagnosed with autoimmune hepatitis 3 years back but I discovered these abnormality slightly earlier then the young girl, I don't have to go through liver transplant. Ya all won't even imagine how much all of us have to go through to get the diagnosed. I went for multiple scans every 2 weeks, I went for endoscope, I had to go through liver biospy and I got poke by needles so many times that I had phobia just looking at them. I too was given these medicine that make my whole body bloated. Because of the changes of my looks I had to resign and refuse to go out, I felt so inferior at that time. The other medicines that I was given makes me lose a lot of hair that I had 2 bald spots on my head. My condition is under controlled right now and I look much better.
I am undergoing the same in 3 months. I am srsly scared if it is really autoimmune hepatitis. A lot of stress
Not sure what Nicole's age is but she is very well-spoken and will definitely go far in life, regardless of condition.
Jaded Stan I’ll be 20 this year, thank you for the support and kind words!
thankyall so much for sharing this,
Thanks for watching and hope you get to learn what is autoimmune disease as when I shared with some friends, they were puzzled and ask if I have AIDS coz they associate autoimmune disease AID to AIDS..lol
i'm cheering for you. hope you are doing okay today
It is good that Singapore has HOTA to help save people's lives that many aren't not even aware of.