Here’s a post from Dr. Kara Wada, an immunologist with Sjögrens, about seronegative Sjögrens. https://www.drkarawada.com/post/seronegative-sjogrens-normal-labs-diagnosis?utm_source=email&utm_medium=email+marketing

I see so many people asking here if they could still have it even though their labs are normal. And sometimes their doctors have even told them that negative labs mean they don’t have it. The truth, backed by science and research, is an estimated 30-40% of people with Sjögrens are seronegative.

I am in the process of being diagnosed with a cognitive tissue disease as in I have gotten the diagnosis muxed cognetive tissue disease because of my symptoms. But now I got a positive blood test that pointed towards scleroderma… looking at the symptoms It matches a lot with what I have got. But some things is a bit unclear if is related or if I have etc. Hope someone here might make it a bit clearer

I rock climb so my skin on my hands is naturally tick and is stiff etc.
so when my doctor asked If I had noticed my skin being ticker or having changes, become more stiff etc. I was really unsure. Looked at pictures on google but not really sure what the pictures that isn’t extreme is showing. Could someone maybe explain this a bit clearer as in how those skin chages looks snd feel like?

I do get these tiny dots I thought was warts until my doctor said he doesn’t think they are and I also see I actually have them all over my palms. Will post pictures (yeah I might have picked on the worst area with them….)
Does anyone have something similar?

Any help is appreciated.

​Hey everyone,

​One of the single biggest hurdles researchers face in finding effective treatments and an eventual cure for scleroderma is simple: we are rare, and patient participation in research is even rarer.

​Science is ready to help us, but researchers cannot develop personalized therapies without actual data and biological samples from the community. If we want better treatments for ourselves and a cure for the next generation, we have to step up and participate. Waiting until tomorrow is too late. Progress depends directly on what we do right now.

​If you are dealing with systemic sclerosis, here is one of the most impactful ways you can help today through the Scleroderma Research Foundation (SRF).

​We have to be our own advocates. Please consider checking your eligibility, reaching out to your care team, or sharing this with fellow scleroderma warriors. Every single data point brings us closer to a cure.

The CONQUER Registry

​The CONQUER Registry (COllaborative National QUality and Efficacy Registry) is a nationwide patient registry and biospecimen repository tracking clinical data and blood samples across 20 major research centers in the U.S.

• ​No experimental drugs: You simply attend your regular routine clinic visits (roughly 2x/year) and fill out surveys at your convenience.
• ​Eligibility:
  • ​Age 18 or older
  • ​Diagnosed with systemic scleroderma (systemic sclerosis)
  • ​Time-sensitive: Must be within the first 5 years of your first non-Raynaud’s symptom
• ​Official Registry Link: https://srfcure.org/living-with-scleroderma/participate-in-our-research/conquer-registry/

​What About CONQUEST?

​Alongside CONQUER, the SRF launched CONQUEST—the first global platform clinical trial for scleroderma. Instead of traditional, slow single-drug trials, CONQUEST tests multiple promising treatments simultaneously against a shared placebo group. This accelerates clinical trials dramatically, reduces the number of patients on placebos, and gets effective drugs to market much faster.

​How to Take Action

• ​If you are in the U.S.: Check the participating clinics on their site (including centers like Johns Hopkins, Mayo Clinic, Stanford, UCLA, HSS, Duke, and others). If your doctor is at one of these sites, ask them about enrolling in CONQUER.
• ​If you are outside the U.S. or not near a site: Reach out directly and ask how you can be involved or stay informed as sites expand.
  • ​Email: info@srfcure.org
  • ​Phone (US): 800.441.CURE (2873)