Behind The Mystery of Scleroderma: A Rare & Sometimes Deadly Autoimmune Disorder

[@lillyrocks2011]

It's a terrible, horrible disease. I hope scientists - hopefully soon -can find a medication for us to stop it or to stop the collagen over production, fibrosis, Rayna etc. 🙏🏼 ❤ It's so sad and hard to have this disease 😢

[@TheBalancingActTV]

Thank you for your comment ❤

[@lillyrocks2011]

​@@TheBalancingActTVThank you, because that's how is possible to know about it. Doctors, pharmaceuticals should see how we suffer because of this. I feel like fighting alone without much or any hope. Someone told me because it's a ,'rare' disease pharmaceuticals don't have much interest. If this were like cancer etc so common they would invest to understand and in medicines against this disease. But I think this is not such a rare disease. Many go through years struggling to get diagnosed. We're misdiagnosed with fibromyalgia Lyme, lupus... Thanks

[@Sofiaa.l9x]

Where do you have it I have it too

[@janicebray9478]

This disease is so rare... we need your help!

[@dorcas9114]

If anyone is offered the opportunity to take part in research, please do. It’s such a rare condition that it’s important for us to take part. I am a participant in several studies, and happy to do so. Just to add: I’m based in the UK

[@GeneOptic]

How can I be a researcher?

[@NoorBano-z5n]

I want to participate in this research how can

[@cinthiarodriguez2635]

I was diagnosed with Scleroderma about 2 yrs ago. It was so hard (it still is) to understand why is this happening to me. I was so lucky to see a doctor who requested a full panel blood work. She saw something off with my results and thats when i got refered to a specialist. I was diagnosed at an early stage. Listen to your body. And dont be afraid to ask.

[@monicalucero7151]

What they do after ?

[@chinnakrishna4117]

​@@monicalucero7151any doctor details

[@aliyaaziz3958]

My daughter has been diagnosed with it I am so upset , she is just 17

[@TPBGR]

Correct her gut health. It can be reversed with diet and lifestyle changes. Functional medicine doctor can help or a nutritionist like Karen Hurd.

[@huviba5826]

1.- CLASSIC Autohemotherapy. 2.- Vitamin D3. 20.000 units daily at least during 2 months

[@Danny-pl9mx]

As you can see from above you are going to get alot of bot responses. Don't contact anyone suggested to you by name like the above.

[@icy-ee4346]

i’m 11 months late to this comment but I was diagnosed at 16, i’m 21 now and am relatively healthy! Since the doctors caught me at such a young age, like your daughter, I have much better treatment and can control the progression relatively great! I go to Boston’s Children’s hospital a few times a month and get regular infusions every two weeks! I’m in the same boat as your daughter, the doctors think it inflames during puberty. I can only imagine your concern as mother, i worry for my mother also, but i promise, we’re doing okay overall :)

[@himanini]

@@icy-ee4346hey i’m 20 female. I was diagnosed at 19, but I am not doing good enough. Can you tell me that’s it effect your face too and arms has gotten so tight?

[@BibleTreasuresAndReviews]

Systemic scleroderna. 😢 We had so many questions. The doctors had no answers, which meant they could only try to treat the symptoms. Looking back, we put the puzzle pieces together of things that developed over time, prior to diagnosis.

[@tedmed7349]

Here is what happened to one youtuber, @xxxxxxxx I had Raynauds--pretty bad actually. I couldn't even get in the shower without having the bathroom pre-heated or my fingers would go yellow, then paste-white. It was painful. Then I got breast cancer. I had lumpectomy, balloon radiation, and chemo. I haven't had a Raynauds episode since then--that was in 2015.

[@lillyrocks2011]

The doctor forgot to talk about Limited Scleroderma. I have it and it does not only affect the skin. The development is slower than Diffuse scleroderma.

[@thejohnstons9419]

2:50pm I have recently found out that I have scleroderma. It is so recent that I don’t know which one that I have the diffuse or the limited type. I have not even seen a rheumatologist yet however my primary has sent me to a rheumatologist for further testing. I have been told for many years that I have fibromyalgia, but they never looked any further to see if there might be something else going on. I started feeling worse so I asked my doctor if there was any other testing that could be done and she told me that there was an ANA test that we could do and that’s when I found out that I was positive for the SCL - 70 test as well as a few others that were positive. I have not yet discussed the test results with a doctor, but I looked it up on Google and figured it out. My nephew’s girlfriend is also a nurse, and she told me that I was positive for scleroderma. After many years of suffering with sore muscles and joints, I’m wondering what other tests I had. I should have done to see if there’s damage anywhere else?

[@kalistamartin335]

I was diagnosed yesterday

[@WayneLeng]

My brother had Scleroderma, the Systemic Sclerosis type and died from it at 52 years.

[@nanupatel1649]

How long he lived with this ?? Because I have also same 😒😒

[@WayneLeng]

@@nanupatel1649 I think he had it for several years. What I noticed first with him was Raynauds. The tips of some of his fingers had lost circulation and he lost the tips.

[@Claudia.nmarin]

A nightmare of disease. 😢 Please we need medications to stop the skin tightening/, the physical changes. 🙏🏼🙏🏼🙏🏼🙏🏼🙏🏼

[@KarenWalton-p7q]

I was diagnises 4 years ago they say if you live with it 4 years you wont die soon. idk im on plaquinil i want to try humira.

[@nanupatel1649]

Hej how’s your health now I just recently diagnosed with systemic sclerosis and I am so worried 😒😒

[@marilynshelton2371]

Ended up with scarring of the heart due to scleroderma.

[@kalishiva18]

Mine came from child abuse. How do I get into this study so that I can give them another perspective instead of possibly genetics

[@Sofiaa.l9x]

Yh. I have it and I'm pretty sure it's skin trauma. They never listen to me tho

[@bella11110]

Like psychologically? My symptoms started when I was recovering from Depression and Anorexia

[@Sofiaa.l9x]

@bella11110 when you were recovering?!?? That's so weird. Did u sh ?

[@bella11110]

@@Sofiaa.l9x yes, after I hit rock bottom with anorexia and depression, I started my recovery but it was really difficult and stressful too, my scleroderma symptoms started a few months after I started recovering

[@imcnagpc2]

Does Raynauds always lead to Scleroderma?

[@jenniferrobertson6754]

I have sceledrem also

[@jodigunn1082]

I have seizures as well

[@souravdhanani]

Please do pranayama for 2 hours daily, it really helps

[@cclovelacegrace]

What is pranayama?

[@himanini]

@@cclovelacegraceyoga

[@771blahblah]

Hair loss?

[@Rhiannamiles]

No

[@faithf5846]

Possibly Low dose naltrexone. Study this medication that is made in a compound pharmacy. 🙏💜

[@ranacottage5764]

What is the reason of this disease

[@TPBGR]

Intestinal permeability or leaky gut

[@cclovelacegrace]

@@TPBGRWhoa is this true??

[@TPBGR]

Yes, that’s the cause of all chronic diseases. Of course there are things that cause intestinal permeability like toxins, stress, diet, structural shifts in the spine obstructing nerves.

[@wannabedrewafualo]

Scientists don’t really understand why it happens. Autoimmune diseases happen when the body begins to attack healthy cells by mistake, we just don’t know why it does this or how to reverse it.

[@amandacruz1325]

I got diagnosed after being exposed to a chemical called silica. I took a pottery/ceramics class in high school and got sick shortly after. Scleroderma and Raynauds syndrome. Silica and other toxic chemicals get into the body and cause so many issues.

[@MrApplewine]

Try 100mg P5P.

[@khatunagelashvili2295]

Sorry, what p5p does for scleroderma?

[@MrApplewine]

@@khatunagelashvili2295 I think when I posted that I had recently saw an article on pubmed from many years ago saying a person had scleroderma which responded to vitamin B5 P5P. I can't find it now though. The other thing which seems to benefit health which may not be related is L. Reuteri from BioGai. I saw a woman with Rosacea which was eliminated by L. Reuteri. Should be warned though that some people with an impaired ALDH enzyme will get toxicity effects from that much P5P. I did after only two days. I stopped and took NAC and Taurine for 3 weeks and symptoms went away. 3 weeks was also the time for 10mg per day divided over time, which is a dose most people can handle of P5P.