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

Жыл бұрын

Thank you for your comment ❤

@lillyrocks2011

Жыл бұрын

​@@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

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

11 ай бұрын

How can I be a researcher?

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

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.

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

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.

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

@TPBGR

4 ай бұрын

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

Ай бұрын

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

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.

Please do pranayama for 2 hours daily, it really helps

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

3 ай бұрын

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?

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.

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

I have seizures as well

I have sceledrem also

Hair loss?

@rhianna8329

11 ай бұрын

No

What is the reason of this disease

@TPBGR

4 ай бұрын

Intestinal permeability or leaky gut

Try 100mg P5P.

@khatunagelashvili2295

6 ай бұрын

Sorry, what p5p does for scleroderma?

@MrApplewine

6 ай бұрын

@@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.