u/ParticularShift4998

ACA positive + Raynaud’s isolated to toes only. Did anyone else start this way?

>Hey all,
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>​Looking for some insight and community experiences. I just got blood work showing I am ACA positive.
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>​My only symptom is Raynaud’s that started about 3 years ago, but it has only ever affected my toes—never my fingers. It isn't painful; they just turn white and cold, then go back to regular pink in 5 to 10 minutes. I don't have any other symptoms right now, and I’m having my nailfold capillaroscopy this week.
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>​It's easy to read worst-case scenarios online, so I wanted to ask directly:
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>​Would love to hear your stories or any perspective from those in a similar boat.
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>Thank you!

reddit.com
u/ParticularShift4998 — 10 days ago

Science wants to cure scleroderma It’s on us to show up

​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.

​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.
u/ParticularShift4998 — 12 days ago