Living with lupus - Patient stories
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- Опубликовано: 9 май 2022
- Lupus is an unpredictable and misunderstood autoimmune disease. It is difficult to diagnose, tough to live with, and a challenge to treat as lupus has a range of symptoms and strikes without warning.
Let’s listen to our Lupus warriors Aishwarya, Suzanne, and Vachasamrita about their challenges of living with lupus and how they manage their symptoms and everyday life. 
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You are awesome Dina! Nothing holds you back! I love it! ❤️
I was also diagnosed with Lupus class 3 focal lupus Nephritis
I too have lupus xx
I have Lupus, Fibromyalgia and Hypothyroidism! Horrible disease 🦠I was in my late 40’s when they finally tested me 😢. I had symptoms for years and doctors didn’t listen or test because I didn’t have the rash on my face.
Try autoimmune paleo diet
This is my issue now 😢and I'm in so much pain but I have so much pain they said it was RA they put me on the medicine still no change then the ANA test was negative so I'm stuck in pain and lupus runs heavy in my family my grandmother had it and RA and fibromyalgia... these doctor don't want to listen
@@IyanifaFalObarawhat are your symptoms...... I also test negative for ANA.....
i have been diagnosed with lupus three years ago 😢it is really terrible experiencing all the kinds of pain
Don't stress too please
Autoimmune paleo diet may help
لا اله الا الله وحده لا شريك له, محمد رسول الله
I am also suffering from this disease
Dr shenai cunsulting this desease
2021 mujhe SLE se vasculitis and C.N.S nd P.N.S neuropathy hai 16 July 2021 mei acute ischemic stroke bhi hua haa physiotherapy se ab normal walking krt lti hu
But yes DM rheumatologist nd immunologist dr. Preksha Dwivedi se treatment continue hai
Medicine mei Steroid ,Mycophenolate mofetil ,HCQ and cyclophosphamide injection 6 month chal tb SLE control hui hai haa yes lifetime zindagi bhar Medicine per depends rhna h
Dekh kr lga mei akle suffer nhi hu SLE se ....... HAR HAR MAHADEV
JAI SHRI KRISHNA
jai Hanuman ji
May Allah bless u 🙏
I also lost my sister 2months ago
I have Lupus myself I’m now taking the Benlysta infusion once a month
Are u on any medication along with Benlysta
I lost my sister due to lupus last month, pls take this disease seriously
How many years ago she has been diagnosed as infected with lupus?
so sorry xxx
That's wrong lupus is not a critical.
Only one problem is there. Medicine addicted people that's only
Please be careful in your each message. Because every lupus patients watching at every video and comment. Each message are giving a possitive attittude other Wise the patients are discouraged. Not repeat this please 🙏🙏🙏🙏
Mei marte marte bachi hu mujhe toh vasculitis plus neuropathy SLE se hua 2021 mei acute ischemic stroke aaya tha but physiotherapy se theek ho gyi hu normal person jese hogi
Mera treatment DM rheumatologist aur immmunologist ka hota hai
But life time medicine per depends rhna hai kismat mei dekhte hai kb tk jeena likha hai
Mediation spiritual hogi hu mnn k shakti k liye
എനിക്കും ഇതു പോലെ ആണ് ഉള്ളത്
Try autoimmune paleo diet
mujhi bhi sLe hai per afg mein koi nahi pehchanta isko but mujhi 2018 mein lagata par meri elaj nahi hue abb mujhi pakistan mein pata chali ki muji Sle lupus hai per mera dard bilkul hy kam nahi ho raha hi mein saat sal sy nahi chal sakty😢or dard bohot hai
I have lupus too..
Wow, we all are new
I'm lubes basand
@@thatwasmethere3526 what?
@@luvsssuffiee. how managing you and symptoms?
Did anyone have antiphospholipid syndrome with lupus
Me
Hi i m suffering from lupus since last 8years ...pls suggest me the life style n many more of anyone have better control on it n having a normal lifestyle with it
Kb kese hai aap ?
Healthy diet and exercise
@bhartisahu7562 ..
Do yoga and meditation in daily routine ...it works like miracle
Healthy diet ...green vegetables ...
I lost my daughter because of lupus
I am also suffering from Lupus
Same here, in England I was diagnosed 30 years ago as I finished university
@@clare1971 really 30 years I can't believe someone can survive this long 😮
It has deteriorated since massively so I can no longer teach which was heartbreaking to be told I would be medically unable to continue teaching and offered retirement aged 33. I could tell you an incredible amount has happened in the past 30 years and it pretty much is the reason behind everything that our lives can or cannot involve. However I’m also able with huge care by a high risk pregnancy teamof docttors to say I managed, at last, to have a child who is now 20 myself using only my body which we were told would be chancy As for the pregnancy story, I see that I could write a book! Also so blessed by the unconditional support of my husband of 25 years almost. With huge good wishes from Clare in Lincolnshire, England x
@@clare1971 what were the symptoms you have then ? And what treatment taken by you?
@@DeepakRajput2000 sorry for being so brief but honestly I find it hard to answer questions where clearly many medications have been prescribed and some for years but others change over time , but I will try to answer you as best I can and always happy to support others. First off aged 10 I was on a month long holiday to Barbados with my parents, my first flight that long. Was a very strong swimmer thenso pretty much no parent would ever supervise me because I followed rules. I chose to go in and out of both the pools and the ocean for almost every day and spent from maybe 10 in the morning until shore and get ready for the early dinner slot , dragged out by my mum arguing about this! Perhaps 6 in the evening. I had high quality sunscreen on, reapplied several times water resistant too. By day 4 was isolating in the bedroom suite miserable having a drip by a a local doctor. My skin was completely covered in rash which itches and
Burned predominately all over face, neck,shoulders, arms as well as back of thighs. I was still in the room by end of holiday and a doctor volunteered to help me on the flight home bless him by putting me with crew along complete empty row made into bed and giving me tablets from his medicine bits in travel bag to try to keep me from continuing vomiting all flight back as well as bandages on bits he can keep covered to stop me scratching the non stop itching. Not short is it? As soon as sun was gone in Britain calmed the itching and eventually the face rash over next 2 weeks. Later and now symptoms have increased and increased such as chronic fatigue and headaches and awful mouth and nose ulcers and pain all over from non identified causes. Also caught every single infection that was around, cold etc and if it was mild and gone in 5 days it for me lasted 2 or 3 weeks and often earlier days I couldn’t get out bed
Diagnosis aged 22 after previous 6 years being told by doctors there was nothing wrong and I was a hypochondriac which was heartbreaking
Medication started low like codeine as needed. After many years now been on varying levels of steroids, prednisone, for 20 years, take daily oxicontin 80s , lansazprole, top up oral morphine, as well as anti depressants and H.R.T drugs following early sudden menopause aged 37 Have also been given many immune suppression medications but am not on at moment, recall hydroxichloriquine. Can’t count hospital stays usually by ambulance but it was over 50 my now certainly. Mind fog makes me feel like I’m making errors so need to stop. Hope some of this helps. Clare x
Is it curable or not plzz say
No it's not curable😢😢
But is Life threatening in rare case
took me years and years
To heal?
She probably means to be diagnosed most of the time you don't really heal as well as others. The treatment for lupus is used to prevent further damage from occuring.
Best treatment where ?
Iris hospital, pongumoodu, tvm
Dr. Vishad viswanathan
@@sajanideepu5279 how much cost for treatment please tell me
Follow nds type 👇
New diet system
Nds bv chauvan
Nds zarna Patel
Nds amrish Patel
Nds anandi ma
Or just go thru videos of nds ( new diet system )
Has anybody experienced skin darkening due to lupus ?
Yes due to HCQ's
@@komalarora7811 is there anyway to reduce this darkening? Or does it fades away automatically once medication stops?
If u r taking HCQ's In day time and go directly in sunlight it cause pigmentation and darkness... once u stop taking it in day time.. within month it goes away.. so no need to worry.. our health is our main priority..
Yes
Yes. My forehead and under my lip.