God bless you baby girl!!! You are beautiful! Thank you for sharing!!! Keep it coming! We need to know! My family just had funeral for my cousin who had this disease! It's horrible!!! I'm glad more people are talking about it! Many still don't know! Thank you again!!!!!
Hi Everyone. I have Systemic Scleroderma. Well maybe not anymore. I'm in Ottawa Canada right now, in the hospital bed, 2 days after a stem cell transplant. My chronic pain... gone! Still have a long ways to go, but letting you all know the cure is near. If there is any info you need, respond and I'll answer...
Thank you so much for this video! I'm so glad I found it. I was just diagnosed with Systemic Scleroderma this year. It's definitely all new & scary. I couldn't imagine growing up with this experience. Your bravery & strength is admirable. God Bless you!!
Same ! It’s truly been terrifying and shocking. So frustrating because it’s not much information or understanding! I had a positive scl-70 result but they haven’t been able to do a biopsy due to me not having open wounds. So I’m still so confused. Jordan, you’re a warrior girl. Thanks for sharing.
I already had copd then got diagnosed with scleroderma and Raynulds. I'm on oxygen and Too young for it. I got my good days and bad ones. Depression ect. Thanks for sharing!
Go vegan and eat fruit and veggies. Do a natural detox. Look into herbs to pull out calcium and gotu kola removes excessive scar tissue in the body. Doctor will never tell you this.
I was diagnosed in 2013 and have most of your systems like loss of pigment on my eyes and hands, ulcers from raynauds in my hands, patches of dry skin all over and some fibrosis on my lungs. I have barretts esophagus but I get endoscopy procedures every couple months to dilate my esophagus so that I dont choke and food doesn't get stuck. I had infection from an ulcer and almost lost my finger. I also had two jaw surgeries because my jaw moved forward when my face tightened. My doctors think i have lupus as well. Hang in there girl! you look beautiful and I hope your healing comes. Eating healthy and changing your diet is the hardest thing but it definitely helps.
This was in my suggested , I recently had positive high Ana count and they are saying they think I have lupus . I read about this recently and think this is actually what I have . For years I had pain and I was told I have fibromyalgia but symptoms keep getting worse I have narrowing of my esophagus, and I was diagnosed with raynauds and joint swelling random fever . I also noticed maybe the last 3 years my face has changed my skin has gotten thicker on my cheeks and forehead my lips are shrinking and nose is getting very thin and I would wonder why . Glad I found you I’m subbing even if I don’t have this you have a positive personality! I hopefully will find out in March for sure
Thank you for sharing, I have never heard of this, just in passing. I was looking for a recent upload on this subject. I'll be keeping you in my thoughts. You also gained a new subscriber. You are one awesome young lady ❤❤ You are very beautiful and have a great attitude. What are you studying in school?
I recommend learning about glyphosate its in all junk food, start by YT-ing Stephanie Seneffs name. Collagen is about 30% glycine, glyphosate is the chemical they use to kill weeds and its in almost all our foods (much more in junk food), glyphosate mimics glycine in our bodies messing up collagen synthesis and plausibly could be playing a roll in scleroderma. Eating organic food only, add live sourkrout as acetobacter eats glyphosate (and is one of the few microbes that can). I just had a look at one of her published papers and it does look like she suspects glyphosate is behind Scleroderma. "Pituitary, thyroid and thymus glands control body and immune function, and disruption can induce disease, including cancer. These glands produce many necessary hormones that control numerous biological processes. Tumorigenic growth also disrupts functionalityof the glands and organs where the growth occurs. A Monsanto trade secret document [13] revealed that there were statistically significant lymphocytic hyperplasias of the thymus as well as significant C-cell thyroid tumours.Thymus lymphoid hyperplasia occurs in Graves diseaseand thymus hyperplasia is commonly observed withcomputed tomography (CT) scans of thyroid cancer patients [22], and is also associated with autoimmune disorders such as myasthenia gravis, lupus erythematosis, scleroderma and rheumatoid arthritis" The science is complicated but eating organic food only, isn't. Good luck.
I'd get a 2nd opinion. Myself and many others, as you can tell from the other comments are "living" with scleroderma. I was diagnosed over 30 years ago. The first few years were difficult and because there wasn't much info. on SSc, my doctors didn't know what the future held. I am now almost 60 and have been off med for most of the 30 years. The only physical evidence that I have SSc are my hands but I live a full life and you will too!
Hi it s great to see ur video abt Scleroderma.. gives a positive approach to me as well .. and am diagnosed with the same disorder.. have you tried any Ayurvedic treatment or natural treatment? Waiting to hear from you
I’m really glad I stumbled upon your video because I, too, have systemic scleroderma! You inspire me to share my story as well so I know I will be making that video soon. Lol
I have scleroderma and. Been going through this since 08 and at this time the doctor say it’s not progressing but I be felling horrible I also have right skin around my mouth and red spots all over my face. Am going through all the stuff you are mentioning. I wish I can have my normal mouth back also hair got really thin.
Jordan, do you ever or have you ever shown pictures of yourself before you were diagnosed with scleroderma? A childhood friend had this awful disease and we noticed little things like her not being able to touch her upper lip with her bottom lip when forming certain words that had B or M sounds. It was so obvious even back then. Is this something to do with your skin is kind of shrinking and becoming very taut. There is another woman named Teresa Nadeau with severe facial things going on, and I was wondering if you have the same strain of scleroderma??
My facial features really didn’t change until I got on medication, the first sign of my condition were my hands changing colors and ulcers on my finger tips
Marilyn, I had experienced the normal aches and pains of arthritis at 25-27 but it wasn't until I began to experience issue with the skin on my face that my medical team was able to put a name to it. Scleroderma actually translates to a hardening of the skin and connective tissue.
I can't take the meds theyve tried giving me. I take a herb called Kallawalla. All i can do is pray. I got the broken blood vessels taking over my face as well.
What type of medications you've taken to treat your scleroderma? Which medications you think helped best to keep your symptoms under control? Which medications you took and you felt didn't help or work at all to control symptoms?
So sorry for the late response..but i was on prednisone, folic acid, methotrexate (weekiy injectable), and nifedipine. The prednisone and the nifedipine kept my condition under control the most. And I would say that the methotrexate probably helped the least
Hi thank tou so muxh for posting your a beautiful girl I have a friend his condition only started after he had blood clot and did a bypass in his leg. Then his fingers. N face feet ears started to swell ...then. They took out his thyroids ...then all the area that swelled started to get spottted white .....he almost died ..this is strong man now weaken down. To cant help himself....so i want to know if any of u suffers from this had any thyroids removed or blood vessels bypassed.
Hi! love your video! i also have scleroderma and make videos about scleroderma and self-care tips! i hope they can be of use to you or anyone you know experiencing and facing this disease!
You are beautiful you look abit like Rudy from The Crosby show. I have had Systemic sclerosis (scleroderma) for almost 15years. I have the raynaulds too that have affected my fingers severely. I was on medication then I stopped for years. In 2007 is when I started getting really painful ulcers on my finger tips I would have to go to hospital for Iloprost infusions for 5days every few months it really helped. I later became immune it had little effect now all my fingers are deformed. I have painful dry ulcers on my elbows that come and go I have skin hyperpigmentation on my face neck and hands. I've covered it for years but it has gotten much better. I have mild fibrosis on my lungs but I have a persistent cough which has led me to have shortness of breath recently. I have hair loss and weight loss. Despite all of this I gave birth to two beautiful boys ages 4 and 1. I was told I was high risk but I had a natural birth twice and the pregnancy helped my raynaulds and I was very healthy during pregnancy. I suffer chronic heartburn that I'm trying to get rid of naturally bcos it causes me to vomit. I'm not taking omeprazole although it works the ingredients are poison. Long term it wont benefit me it's just a temporary fix. Every sufferer of this rare disease shares similar struggles but only we know the pressures of the illness. I entered a few beauty pageants and won and won charity awards and tried to spread the condition of scleroderma for awareness. I was successful I was in my local newspaper and gained support from my community. I've been held back because of this illness but I want to be in permanent remission. Cbd oil has cured many with lung fibrosis the higher the strength the better. Cbd oil is known to cure cancer too if caught early. There is a cure for all diseases it's better natural than pharmaceutical. I will let you know how my journey goes on cbd oil. Take care.
I had a stem cell transplant. But I also had hodgkin's lymphoma at the time. Right now I'm in remission from both. They used my own cells. If I didn't have cancer I probably wouldn't have qualified for the stem cell transplant according to my rheumatologist. She told me it's for the worst cases and the scleroderma by itself wouldn't been enough. It did help me for a short time until I got into an immune therapy study.
susan wynne I’m sorry I’m just seeing your comment, but my doctors took me off my medication because my body really didn’t need them to fight infections and some of my medications really weren’t doing anything to help me
@@JordanAstree Thanks for your response. I cannot take any of their drugs! I take Kallawalla . I walk for 35mins a day and stretch. I wish it would just leave
I've been living with systemic scleroderma for 30 years. I've been stable for most of those years. Stay strong!
Dr robert morse reversed this with a vegan alkaline doctor and detox. Gotu kola helps this also.
I m also suffering from systemic scloderma since 1998😢
@@tawana2inspire Could u please link the video? Thank you so much ❤
I am diagnosed with it for 4years but I take my medication but I donot take it on
God bless you baby girl!!! You are beautiful! Thank you for sharing!!! Keep it coming! We need to know! My family just had funeral for my cousin who had this disease! It's horrible!!! I'm glad more people are talking about it! Many still don't know! Thank you again!!!!!
so adorable. Keep strong
I have it too mixed with raynauds and lupus.
Hi Everyone. I have Systemic Scleroderma. Well maybe not anymore. I'm in Ottawa Canada right now, in the hospital bed, 2 days after a stem cell transplant. My chronic pain... gone! Still have a long ways to go, but letting you all know the cure is near. If there is any info you need, respond and I'll answer...
Benjamin Lessard
Hi
Is it curesble and how many time u want to do the stem cell .?
Still eat healthy. Gotu kola helps.
Ive heard Dr Robert Morse talk about healing scleroderma on youtube praying any of you find healing 🕊❤️
Hi beautiful I’m 44 diagnosed at 20 got 3 kids. Thinking about telling my story on a channel pros and cons?❤️
Yes you should definitely do it !
Please i need to hear it
Thank you so much for this video! I'm so glad I found it. I was just diagnosed with Systemic Scleroderma this year. It's definitely all new & scary. I couldn't imagine growing up with this experience. Your bravery & strength is admirable. God Bless you!!
Thank you so much !
Same ! It’s truly been terrifying and shocking. So frustrating because it’s not much information or understanding! I had a positive scl-70 result but they haven’t been able to do a biopsy due to me not having open wounds. So I’m still so confused.
Jordan, you’re a warrior girl. Thanks for sharing.
I already had copd then got diagnosed with scleroderma and Raynulds. I'm on oxygen and Too young for it. I got my good days and bad ones. Depression ect. Thanks for sharing!
Go vegan and eat fruit and veggies. Do a natural detox. Look into herbs to pull out calcium and gotu kola removes excessive scar tissue in the body. Doctor will never tell you this.
I was diagnosed in 2013 and have most of your systems like loss of pigment on my eyes and hands, ulcers from raynauds in my hands, patches of dry skin all over and some fibrosis on my lungs. I have barretts esophagus but I get endoscopy procedures every couple months to dilate my esophagus so that I dont choke and food doesn't get stuck. I had infection from an ulcer and almost lost my finger. I also had two jaw surgeries because my jaw moved forward when my face tightened. My doctors think i have lupus as well. Hang in there girl! you look beautiful and I hope your healing comes. Eating healthy and changing your diet is the hardest thing but it definitely helps.
Thank you for your video . I also have systemic scleroderma wishing you all the best x
Hello luv so happy I found your channel I have systemic scleroderma as well I was jus stopping by showing some love 💙💙
Thank you so much for watching ❤️
Scleroderma killed my mom. I wish you all the support in the world, it hurts and it hurts to see the disease unfold. Stay beautiful and happy ♥️
This was in my suggested , I recently had positive high Ana count and they are saying they think I have lupus . I read about this recently and think this is actually what I have . For years I had pain and I was told I have fibromyalgia but symptoms keep getting worse I have narrowing of my esophagus, and I was diagnosed with raynauds and joint swelling random fever . I also noticed maybe the last 3 years my face has changed my skin has gotten thicker on my cheeks and forehead my lips are shrinking and nose is getting very thin and I would wonder why . Glad I found you I’m subbing even if I don’t have this you have a positive personality! I hopefully will find out in March for sure
I hate the the pulmonary lung test...i always feel like i want to pass out after but it's a necessary evil.
Angela LaCour yess!! It’s the worst but I love to see my growth
I'm in nursing school and studying Scleroderma. Your vid really broke it down well, and helped me to better understand it! Thanks love your energy!
That’s so cool, so glad I could help ❤️
Meagan Fairley same...so appreciative of this video
Thank you for sharing, I have never heard of this, just in passing. I was looking for a recent upload on this subject.
I'll be keeping you in my thoughts. You also gained a new subscriber. You are one awesome young lady ❤❤
You are very beautiful and have a great attitude.
What are you studying in school?
Thank you , Thank you , Thank you for talking about this- I relate to it all. I feel alone. I subscribed to your channel. 💗💗💗💗
tricekc3kw thank you for watching and trust me you are not alone ❤️
I have scleroderma 8 years. But I 'm healty. Now I 'm in Thailand.
TOI STORY how did you heal
Wow amazinng! But how ypu can heal?
@@KrissyB2011 I have been taking care of myself by using overall holistic treatment.
@@KrissyB2011 have been taking care of myself by using overall holistic treatment.
I recommend learning about glyphosate its in all junk food, start by YT-ing Stephanie Seneffs name.
Collagen is about 30% glycine, glyphosate is the chemical they use to kill weeds and its in almost all our foods (much more in junk food), glyphosate mimics glycine in our bodies messing up collagen synthesis and plausibly could be playing a roll in scleroderma.
Eating organic food only, add live sourkrout as acetobacter eats glyphosate (and is one of the few microbes that can).
I just had a look at one of her published papers and it does look like she suspects glyphosate is behind Scleroderma.
"Pituitary, thyroid and thymus glands control body and immune function, and disruption can induce disease, including cancer. These glands produce many necessary hormones that control numerous biological processes. Tumorigenic growth also disrupts functionalityof the glands and organs where the growth occurs. A Monsanto trade secret document [13] revealed that there were statistically significant lymphocytic hyperplasias of the thymus as well as significant C-cell thyroid tumours.Thymus lymphoid hyperplasia occurs in Graves diseaseand thymus hyperplasia is commonly observed withcomputed tomography (CT) scans of thyroid cancer patients [22], and is also associated with autoimmune disorders such as myasthenia gravis, lupus erythematosis, scleroderma and rheumatoid arthritis"
The science is complicated but eating organic food only, isn't.
Good luck.
Thank you , I’ll definitely check it out
Wow i have systemic scleroderma too. It was a pleasure watching your video. We favor a lot ❤️
Thank you so much for watching ❤️
My lab results showed scleroderma. My rheumy says no way i would be crippled and in a wheelchair unable to move. I am getting a new rheumy.
I'd get a 2nd opinion. Myself and many others, as you can tell from the other comments are "living" with scleroderma. I was diagnosed over 30 years ago. The first few years were difficult and because there wasn't much info. on SSc, my doctors didn't know what the future held. I am now almost 60 and have been off med for most of the 30 years. The only physical evidence that I have SSc are my hands but I live a full life and you will too!
Hi it s great to see ur video abt Scleroderma.. gives a positive approach to me as well .. and am diagnosed with the same disorder.. have you tried any Ayurvedic treatment or natural treatment? Waiting to hear from you
kalaiyarasi ponnnurangam no I haven’t tried any treatments other than what has been prescribed by my dr. In the past
I’m really glad I stumbled upon your video because I, too, have systemic scleroderma! You inspire me to share my story as well so I know I will be making that video soon. Lol
Jenny Ponce Awh thank you for watching ❤️ I look forward to seeing your video !
I have scleroderma and. Been going through this since 08 and at this time the doctor say it’s not progressing but I be felling horrible I also have right skin around my mouth and red spots all over my face. Am going through all the stuff you are mentioning. I wish I can have my normal mouth back also hair got really thin.
Jordan, do you ever or have you ever shown pictures of yourself before you were diagnosed with scleroderma? A childhood friend had this awful disease and we noticed little things like her not being able to touch her upper lip with her bottom lip when forming certain words that had B or M sounds. It was so obvious even back then. Is this something to do with your skin is kind of shrinking and becoming very taut. There is another woman named Teresa Nadeau with severe facial things going on, and I was wondering if you have the same strain of scleroderma??
My facial features really didn’t change until I got on medication, the first sign of my condition were my hands changing colors and ulcers on my finger tips
Marilyn, I had experienced the normal aches and pains of arthritis at 25-27 but it wasn't until I began to experience issue with the skin on my face that my medical team was able to put a name to it. Scleroderma actually translates to a hardening of the skin and connective tissue.
I can't take the meds theyve tried giving me. I take a herb called Kallawalla. All i can do is pray. I got the broken blood vessels taking over my face as well.
I have been taking a certain extract veg. water with a good result. No more pain.
What type of medications you've taken to treat your scleroderma? Which medications you think helped best to keep your symptoms under control? Which medications you took and you felt didn't help or work at all to control symptoms?
So sorry for the late response..but i was on prednisone, folic acid, methotrexate (weekiy injectable), and nifedipine. The prednisone and the nifedipine kept my condition under control the most. And I would say that the methotrexate probably helped the least
A vegan diet and a natural detox and gotu kola. Dr. Robert morse or Dr. Sebi can reverse this naturally.
Hi thank tou so muxh for posting your a beautiful girl I have a friend his condition only started after he had blood clot and did a bypass in his leg. Then his fingers. N face feet ears started to swell ...then. They took out his thyroids ...then all the area that swelled started to get spottted white .....he almost died ..this is strong man now weaken down. To cant help himself....so i want to know if any of u suffers from this had any thyroids removed or blood vessels bypassed.
Hai sis
i am sufferring from scleroderma.
cam anyone suggest the diet chart to be followed for scleroderma with pulmonary fibrosis
Hey beautiful what were your first symptoms?
The ones that i can remember are me falling asleep in class and not realizing how tired i was and my finger tips turning blue
Great video
OMG someone like me 😭
❤️❤️❤️
Hi!
love your video!
i also have scleroderma and make videos about scleroderma and self-care tips! i hope they can be of use to you or anyone you know experiencing and facing this disease!
Lyna Phung thank you ❤️ I’ll definitely check out your videos!
Jordan Astree' it feels great to connect with other fellow scleroderma friends Online! I love it! We can get through this together 😁😁
You are beautiful you look abit like Rudy from The Crosby show.
I have had Systemic sclerosis (scleroderma) for almost 15years.
I have the raynaulds too that have affected my fingers severely.
I was on medication then I stopped for years. In 2007 is when I started getting really painful ulcers on my finger tips I would have to go to hospital for Iloprost infusions for 5days every few months it really helped.
I later became immune it had little effect now all my fingers are deformed. I have painful dry ulcers on my elbows that come and go
I have skin hyperpigmentation on my face neck and hands. I've covered it for years but it has gotten much better.
I have mild fibrosis on my lungs but I have a persistent cough which has led me to have shortness of breath recently. I have hair loss and weight loss.
Despite all of this I gave birth to two beautiful boys ages 4 and 1.
I was told I was high risk but I had a natural birth twice and the pregnancy helped my raynaulds and I was very healthy during pregnancy.
I suffer chronic heartburn that I'm trying to get rid of naturally bcos it causes me to vomit. I'm not taking omeprazole although it works the ingredients are poison. Long term it wont benefit me it's just a temporary fix.
Every sufferer of this rare disease shares similar struggles but only we know the pressures of the illness. I entered a few beauty pageants and won and won charity awards and tried to spread the condition of scleroderma for awareness. I was successful I was in my local newspaper and gained support from my community. I've been held back because of this illness but I want to be in permanent remission.
Cbd oil has cured many with lung fibrosis the higher the strength the better. Cbd oil is known to cure cancer too if caught early. There is a cure for all diseases it's better natural than pharmaceutical.
I will let you know how my journey goes on cbd oil. Take care.
I have a type of scleroderma and I am healing with the Medical Medium. He knows why we have it and how to heal.
Did you get a stem cell transplant? Sorry I have so many questions
I had a stem cell transplant. But I also had hodgkin's lymphoma at the time. Right now I'm in remission from both. They used my own cells. If I didn't have cancer I probably wouldn't have qualified for the stem cell transplant according to my rheumatologist. She told me it's for the worst cases and the scleroderma by itself wouldn't been enough. It did help me for a short time until I got into an immune therapy study.
Rainbow in Bloom Thankyou for the response! Glad your doing better.
I have just been diagnosed with scleroderma , the same you that you have and lupus as well.
Why don't you have to take meds?
susan wynne I’m sorry I’m just seeing your comment, but my doctors took me off my medication because my body really didn’t need them to fight infections and some of my medications really weren’t doing anything to help me
@@JordanAstree Thanks for your response. I cannot take any of their drugs! I take Kallawalla . I walk for 35mins a day and stretch. I wish it would just leave
susan wynne trust me , same here