Hi everyone! I’m Liz with Leapcure. We’re helping raise awareness of a clinical study for adults 18+ in Australia, evaluating an investigational treatment for adults with certain autoimmune diseases, including systemic sclerosis (SSc), a form of scleroderma.

The study is looking for people whose systemic sclerosis/scleroderma remains active despite previous treatment. Importantly, this study is specifically looking for people with diffuse cutaneous systemic sclerosis, a form of scleroderma characterized by more widespread skin involvement. People with limited cutaneous systemic sclerosis are not suitable for this study. Participants must also test positive for specific autoantibodies and have had symptom onset within the past 7 years.

The investigational therapy, CRT-402, uses an in vivo CAR-T approach designed to target CD19-positive B cells by programming the body's own T cells inside the body. No leukapheresis or ex vivo cell manufacturing is required.

If you're curious whether this study might be a fit for you, Leapcure is here to help. Our team provides one-on-one support, answers questions, and helps individuals learn more about the study and potential suitability. There is no obligation to take part; just an opportunity to explore your options.

Start by completing a short questionnaire: https://lpcur.com/rscleroderma-research

You can also learn more in our FAQ doc here: https://canva.link/1vdus9gm7dj4ote

I know the disease hasn’t been 100% solved in terms of if it’s caught via something out in nature or the like, or genetics. Although has anyone done extensive reading about whether it’s likely to be one or the other?

I have zero esophageal motility and haven’t for a few years now. I have severe GERD, completely open les and all the fun that comes with it. A few years ago I had a partial tif and it was a nightmare in the beginning and only helped for about a year. Fast forward to now and I was recently hospitalized for severe dehydration from an extended period of vomiting. I had a new GI doctor treat me who actually gave me hope instead of the “there’s nothing we can really do at this point” speech. He’s recommending a type of gastric bypass, roux en y I think it’s called. But essentially you don’t get reflux anymore because they section that part of your stomach off from your esophagus. Has anyone heard of this or had it?

I have had scleroderma since 2021. My face is often very swollen. Does anyone else experience this?
I also have problems with my jaws, which are very painful.
I am starting methotrexate in a few days; I hope it helps with the swelling in my face and fingers, as well as the pain.

Has anyone every experienced voice problems as a result of esopohogeal problems. I have MTD and throat tightness because of it.

Hi! I'm Arlyn with Leapcure. If you or someone you know is living with Pulmonary Hypertension associated with Interstitial Lung Disease (PH-ILD), a clinical research study may be worth exploring.

Researchers are evaluating an investigational inhaled treatment for adults living with PH-ILD. Eligible participants who complete the initial treatment period may have the opportunity to continue into an open-label extension period.

The Leapcure team is supporting this study by providing one-on-one support, answering questions, and helping interested individuals connect with a study center if they may qualify.

Interested in learning more? Start with this short questionnaire, and a Leapcure team member will reach out to answer questions and discuss next steps: https://lpcur.com/rscleroderma

I went in for a follow-up about my fatigue. I brought up that I might have circulation issues as my feet, hands and sometimes lips turn blue extremely often, sometimes multiple times a day.

The doctor pretty much immediately looked up CREST and showed me. I was confused and a bit alarmed because CREST/limited scleroderma was NOT on my radar, I’d somehow never come across it while doing my own research.

While my blueness could align with Raynaud’s, I didn’t recognize any of the other visual symptoms. My jaw dropped when he asked me about “esophageal dysmotility or acid reflux” - I have had some level of heartburn/reflux every day for several years, some swallowing weirdness occasionally, and haven’t had the chance to bring it up to a doctor yet.

The other symptom that the doctor considered a possibility was some tiny dark veins(?) and small areas of discoloration on my legs that are new, and very faint — but I personally didn’t really think that they matched the images he showed me of the telangiectasia, at least as they look now. And I am only finding these spots on my legs with a few dark blue tiny veins on my hands and wrists, none at all on my face. They’re very mild right now but the strange areas of discoloration do seem to me to be some kind of vascular thing and not on the surface of my skin. I think it’s a little freaky that they’ve all shown up (or worsened) in the last year, although they’re only really noticeable to me rn and not painful.

As I noticed these recent skin changes I found myself thinking “guess I’m getting old, these are just old people skin problems” — and then spiraling a little because, wait, I’m 28. That’s not old enough to have old people skin problems. Should I be seeing things like this pop up so early? My partner, friends and family have all recently on different occasions exclaimed about the cold ashy blue colour of my lips and/or hands. And I’ve had odd thoughts along the lines of “huh, I wonder if this is what my feet will look like when I die.” Which is kind of interesting but morbid.

I will swear up and down that I’ve never had this problem before, at least not this bad. I have certainly not had to deal with people telling me I look genuinely like a dead person just because I’m in the house without socks on.

This doctor is a new one for me, I managed to switch (hard to do in Canada!) after dealing with years of being brushed off by my old family dr. This one ordered some blood testing: ANA, ACA, Anti-Scl-70, Anti-RNA-Polymerase III. We actually tested ANA (and rheumatoid factor, and CRP) back in August when looking for fatigue causes and everything came up as normal, so auto-immune problems were ruled out at the time.

He is referring me to a rheumatologist as well. I’ve never seen a specialist; I’m not currently diagnosed with anything (besides a “loose ligaments” casual diagnosis from old dr, 10 years ago) so it’ll be my first time!

I feel a bit frustrated at how much work it took on my end to find a dr to take me seriously but in this case, if the doctor is correct in suspecting “CREST” I’m really hoping that it means we’re catching an important thing early, and that there might be treatments for it that could also help with my chronic fatigue and mental fog… Idk much about how those systems interact but logically if there’s an immune system problem happening I feel like that would make sense?

In any case, reading that this would be a progressive condition is scaring me — especially since I thought at the most my appointment would end up being about wearing compression socks or losing weight or something idk. Not that it’s a bad thing to have it open up some actual investigation. It’s just a bit jarring.

I’m including pics of some of the symptoms I mentioned. Ofc not expecting medical advice or diagnosis but while I wait for my bloodwork & rheumatology I wanted to know if anyone experiences anything similar. Especially curious if the weird areas on my legs look familiar as I can’t really find similar pics online.

(Worth noting because it doesn’t show well in my pictures- the “patches” of reddish/purplish skin on my calves are in the same spot on each leg, same size, mirrored to each other. Both below my knees and on the outside of the calf. Idk I just thought that was interesting. Also in the pics of my legs the lighting made me look green-blue. But my skintone was actually ok I think lol)

I hope I'm not breaking any rules. My mother has SDS and it has progressed very far but today I found out about Auto-HSCT. It's expensive, sure, but if I'll help it's worth a try. Is there anyone who tried this procedure and were there any positive changes in your condition? Thank you.

I have esophageal dismotility and have been doing trial and error with foods to figure out what works for me. I was wondering if anyone has any snack or sweet treat recommendations. I am a big sweet treat person and don't know where to start, and also am trying to find soft snacks that might not irritate me. I would love to hear what works for you guys/ what foods you guys enjoy.

When I was 4 I was diagnosed with Linear Morphea Scleroderma; I’m now 30.

When I was first diagnosed I was with looooots of doctors because it wasnt a widely researched immune disorder and because it rapidly moved to various parts of my body (face, back, belly, entire right leg, right butt cheek, and foot). Never once did I see another kids like me or anyone with my type of scleroderma.

I’ve been to a few different chapters within the scleroderma foundation, but the biggest theme was that there was never anybody my age or anybody that had my type of scleroderma. In a world in which I already feel isolated, I felt ten times more because I couldn’t find somebody to relate to or make friends with.

How and where do you folks get your community these days?

Looking for dermatologist recommendations in the Naples/Collier County/Fort Myers area for my mom. She was diagnosed with scleroderma in 2020 and has had many many biopsies and squamous cell carcinomas removed. They're moving into the area in a couple weeks and she just had 8 more removed with a few of them being cancerous and the potential for melanoma. All recommendations are greatly appreciated 🩷

A few months ago I noticed a dent at my hairline, but it was so small and not able to be seen with your eyes I thought maybe I just had it forever and never noticed. But today I was putting lotion on my face like I always do and it feels noticeably longer, almost all the way to my eyebrow, but the skin looks fine and none of it can be seen, only felt. Maybe I’m just crazy and it was always that long??? My diagnosis of systemic sclerosis is tentative and my only notable skin symptom is a big red bump on my foot which the doctor did not care to even look at, but was told by a foot doctor it was certainly autoimmune. I have no other skin symptoms at all. My next rheum appointment isn’t for 6 months. Should I bother the doctor or naw thank you and bless you for reading.

Hi
I (54f) went to see my Rheumatologist last yr for 1st time. I had a positive ANA 1:160
Homogenous and speckled, and the only other tests that where abnormal was Anti-CCP Ab, IgG + IgA (RDL) 27  H and ESR was elevated slightly. So I thought it might progress to RA. *** ***Fast forward to now, my right index an middle fingers have Raynauds, the skin around my finger nails and tip of my fingers are thick and hard, my fingernails look weird and my fingers are more sensitive and hurt . I have had multiple finger ulcers and my finger tips look shiny.I have problems swallowing and have had that off and on for a few months. I have super dry mouth, now I’m having digestive problems and bowel changes. I saw my Rheumatologist a couple of days ago and was telling him about the changes and showed him the pictures and I felt like he was trying to dismiss the symptoms. But because I kept pushing for answers, he referred me to a Dermatologist.
I have already see a neurologist and he said there is nothing neurological that is causing me to have difficulty swallowing. So I’m having to wait and see. Has anyone been in my shoes?

I’m so lost right now. For the past 3 years, my local rheumatologist has been bouncing around the fact that I must have CREST. I have an ANA of 1:2560 - centromere pattern; centromere of >8; high ESR and CRP; weakly positive Mi-2; elevated aldolase; a ton of muscle and joint weakness and pain. My esophagus is tortuous and was balloon dilated in February of this year. I have a DeMeester score of 62.2, major GERD, a grade 4 Hill Classification (basically no LES) and a hiatal hernia. I also have tightness in my feet and can barely bend my toes. My local rheumy has been treating me with imuran and Plaquenil. Well.. I was just seen by a major medical institution who told me that I have ‘no signs of scleroderma’ and that I shouldn’t even be seeing a rheumatologist. They recommended I stop all immunosuppressants immediately. What?! Um.. the centromere stuff?? The esophageal destruction?? Nope - totally coincidental apparently. So now I’m just supposed to live in pain with all of these blood markers and esophageal issues and it’s… fibromyalgia? They actually said that if I look for auto-antibodies, I’m bound to find some. For what it’s worth, the only reason that my local doc found the ACA was due to my pain. I’m so confused. I don’t have Raynaud’s and my nailfold caprilloscopy has always been normal. Any insight would be appreciated 💙

Hi 👋

I'm posting this question again because I didn't receive any response last time.

I am taking Methotrexate (oral) for five and a half months with a very good response. I take it on a Friday and by Thursday I start to feel Scl symptoms ( although not as severe). Is it possible that the effect of the Meth wears off at the end of the week? After my dose I feel better the next day.

Thanks in advance.

My beautiful wife of 25 years lost her life to this horrible disease. There are no words that could ever fully express what she meant to me, our family, and everyone who had the privilege of knowing and loving her.

She was strong, resilient, and faced everything life threw at her with a strength that was truly remarkable. She had a way of taking things in stride, even when she was fighting battles that most people never saw. Only those closest to her truly knew how sick she was and how much she was enduring behind the scenes.

One minute, we were laughing together, and the next, we were in the ICU, watching her fight for her life on life support. Nothing can prepare you for how quickly life can change. You never imagine that an ordinary moment could become one of your last normal moments together.

To all the caregivers out there, please be patient with yourselves and with the people you love. Some days will be harder than others. There will be frustration, exhaustion, fear, and moments when you feel overwhelmed. Give yourself grace, hold your loved ones a little closer, and cherish even the smallest moments together. The person you’re caring for may be fighting a battle far greater than you can see.

You never know what tomorrow holds. Take the pictures, share the laughs, say “I love you” often, and never take the time you have together for granted.

Twenty-five years of loving my wife will never feel like enough. I would give anything for one more conversation, one more laugh, one more hug, or just one more ordinary day with her.

She will forever be a part of me, and her love will live on in our family. My heart is broken, but I am beyond blessed to have shared 25 years of my life with such an incredible woman.

Until we meet again, my beautiful wife. You will always be loved, always be missed, and never be forgotten. ❤️

25, f, I just got the blood test results back and am extremely concerned. I’m trying to not jump to conclusions without seeing my rheumatologist beforehand but it’s very difficult seeing the sclerosis positive result. And to make it even worse, it’s positive for the diffuse type which I think is the most aggressive type?

I kept getting told by doctors that there was nothing wrong I was young and healthy, etc. I kept having symptoms (Raynouds, finger stiffness, and face/ body rashes). Anyone going through the same thing? It’ll be a few weeks before I can follow up and I’m freaking out not being able to concentrate during work. Cannot get anything done with this looming thought.

My rheumatologist won’t prescribe any low dose steroids. Recently they changed my diagnosis from SLE to CREST. Two weeks ago she said she’d send me steroids, but now because I’m most anti-centromere positive she doesn’t even want to do low dose.

I got the flu shot and it caused a flare. First in over a year. I can’t work because of the pain in my hands. She told me to take more NSAIDS.

I am one month away from my year to date at my current employer (and getting FMLA if needed). I am so proud of myself for making this far and being able to work full time. I just don’t want this to trip it up.

Hey everyone,

​I wanted to share some recent information that might be helpful to anyone looking into CAR-T cell therapy for systemic sclerosis / scleroderma.

​I just had a consultation call with Sheba Medical Center (in Israel), which is widely recognized as one of the leading global centers for CAR-T cell therapies.

​Here are the key takeaways from the call:

• ​Availability & Cost: They do offer CAR-T therapy for scleroderma. The quoted out-of-pocket cost is approximately $70,000 USD. For perspective, the same or similar treatment pathways in the US can easily exceed $400,000 to $500,000+ if you aren't fully covered by insurance or on an all-expenses-paid clinical trial.
• ​Eligibility Criteria: I personally was not eligible because I am currently asymptomatic / do not have active symptoms yet.
• ​Who qualifies: They indicated they are specifically looking for patients with active organ involvement—specifically lung involvement (like ILD/pulmonary fibrosis) that is refractory or not responding to standard treatments (immunosuppressants, biologics, etc.).

​I know medical travel isn't an option for everyone, but with CAR-T showing so much promise in autoimmune diseases and access being so restricted/expensive in North America, I figured having a real number and clear criteria might help someone here who is running out of options.

​Hope this helps someone who needs it. Happy to answer any questions about how the initial intake/call went.

​(Disclaimer: I'm just a patient sharing my personal experience from an inquiry call, not a doctor. Always check directly with your rheumatologist/medical team regarding treatments and eligibility.)

I’m looking for an opinion on an otherwise healthy 18-year-old female with Raynaud’s symptoms for 1–2 years and a positive ANA at 1:160 with a centromere pattern. She has some occasional numbness in her feet and very occasional blue coloring. She has no other reported symptoms of systemic sclerosis. Her ferritin has been elevated for 3 years, reportedly around 700, her ESR is normal, hsCRP was 1.7, and her liver enzymes were temporarily elevated a few months ago but have since normalized. She has only had ANA testing, with no specific anticentromere antibody testing or nailfold capillaroscopy reported. How likely is early systemic sclerosis comparedCREST what other conditions could explain these findings, and what would you recommend for further testing and long-term prognosis?

Hey all,

I was recently diagnosed with scleroderma (systemic sclerosis) in Vancouver. My rheumatologist at the Vancouver scleroderma center referred me for an echocardiogram and a chest CT, both marked urgent. These scans check for heart and lung involvement, which are the main things that make this disease dangerous if they're caught late.

I was just told the wait time is around a year.

Really? An urgent referral for a serious autoimmune disease, and the answer is a year? I have a two-year-old son. I've paid a lot of tax over the years, and now that I actually need the system, I feel like I'm out of options.

For anyone in BC or elsewhere in Canada who's been through this:

Has anyone gotten an urgent scan moved up? What worked?

Are cancellation lists worth it, or does calling the imaging department directly help?

Has anyone gone to a private clinic for a CT or echo, and did your specialist accept the results?

Any other scleroderma folks here? How long did your baseline tests take?

Honestly frustrated, but I'd really appreciate any advice.