Welcome & Scleroderma 101: Understanding diagnosis and treatment

SRF Board Member Susan Feniger and SRF Board Chair Luke Evnin, PhD, welcome attendees to the SRF Patient Forum, “Collaborating for a Cure,” on June 6, 2023.
Dr. Bernstein will cover the basics of systemic sclerosis, how it is diagnosed, treatments for symptoms, and why research is so important to understand this disease. Presented by Elana J. Bernstein, MD (Assistant Professor of Medicine, Rheumatology Division at Columbia University Vagelos College of Physicians and Surgeons & Director of the Columbia University Scleroderma Program).

[@d.b.4394]

My dear mother didn’t make it to remission with this ugly disease! Everyday I get lost in the details of why isn’t there a cure and what exactly is this disease! Why did it happen to my mother! Her life was cut too soon! I panic thinking is this heredity… just a world full of limited answers! I’m grateful for this channel and for every researcher who has dedicated their life to finding a cure / new treatments! Thank you!

[@janetwilliams2890]

What causes systemic sclerosis? I have been going crazy researching and trying to find answers. It’s so unfair after all this time and still no cause and cure!

[@Maddie-lv5sg]

What other enviromental factors? Vaccines of any kind?

[@sammon8]

or could it be a false positive for the the anti-SCL-70 in the case of someone showing limited signs

[@bg5760]

I’ve just been diagnosed and found msc’s. Diseases like ms, cardiovascular diseases, pulmonary fibrosis, kidney disease, gut micro biome, etc are all being successfully treated with this in Panama & Mexico by US phd’s (see Dr. Caplan & Dr. Riordan)
Are we looking at mesenchymal stem cell treatment (early IV infusion)?
Immunomodulatory effects and anti inflammatory. Must currently go outside the USA
God bless us all🙏

[@athenamarieroberts]

20 years and still nothing that has helped me. It breaks my heart that today 23 years later I suffer with an illness and there has been nothing to help. My body is no longer my body and I am unrecognizable.
My doctors really no nothing about Scleroderma and sadly dedication on their part is just not there.

[@SRFCURE]

Hi @athenamarieroberts, thank you for sharing your perspective. So sorry to hear how difficult this has been for you. We remain committed to advancing research so that we can find better treatments and ultimately a cure for scleroderma.

[@daysgoneby3527]

I presume that due to being the main organisation that conducts research and is the central hub for collective networking and information that it is already aware of this research and has likely decided against it, but on the off chance it hasn’t, and that someone here is linked to the scleroderma foundation, or is a specialist in this video I ask this..
Has the organisation or anyone in it done any research or treatment on human subjects (in vivo) on a protein called caveolin-1?
From what I can tell caveolin-1 is a protein produced by the cav1 gene and is responsible for a lot of functions and regulations but abnormalities can cause inflammation and a lack of adipose fat.
A deficiency or mutation can cause a lack of this protein and restoring caveolin-1 by use of a peptide or replacing the CAV1 gene if possible might be the key to treating or preventing pulmonary fibrosis or ILD.
I’m looking into this and need to get a test done but does anyone here know if this organisation or any of the specialists have looked into this?