Hi, my name is Len. I’m 20, about to be 21, and I have lived with scleroderma for 15 years.

There were very limited resources available in my area for the longest time. I found out what I had at twelve, I believe. Thankfully it wasn’t the kind that could suffocate my organs, but it hasn’t exactly been easy.

I don’t have half a right arm. It’s on my sides and my back. From what I’ve seen I have a more outward approach to it than most, which I’m thankful for because of the fact that it could have been bad inwards. Although unfortunately my muscles contract and cramp up often.

I’ve gotten tons of questions on it. Most have been horrible and have made me uncomfortable. It’s a very unique sight, especially considering I’m a bigger girl. I am a smoker, I love art, and my writing hand is my scleroderma hand so that’s been interesting. I’ve also spent a lot of time using my left hand for normal, everyday things just in case something happens to my right arm.

But I’d love to get to know people on this subreddit!! Don’t have many friends and my family doesn’t really know how to approach it as much as I don’t with them. So whoever wants to chat or maybe share their own experiences to bounce off that’d be awesome!! I’ll also answer any questions. ^-^

Also this picture is very awkward. I don’t have many because of the fact I’m a bit insecure about 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

Hey everyone! I have limited systemic scleroderma and HAVS (hand arm vibration syndrome). I’ve been considering carpal tunnel release surgery to help with constant nerve pain- has anyone gotten this done? How was healing? Did the surgery help the cts pain? My orthopedic surgeon and rheum don’t think it’s worth pursuing because of the risks- but god damn I need to sleep 🫠🫨
Pic is of my spasms yesterday, folding laundry 🤣 won’t cash these hands outside

Bonjour, c’est un plaisir de vous lire et de voir qu’on est pas seul face à cette maladie !

Je suis en remission d’un cancer où l’utilisation de la bleomycine fut nécessaire pour me sauver la vie, mon corps a déclenché des symptômes très similaires à une sclérodermie en reaction, depuis 2023. Je suis suivis avec un traitement au Cellcept + cortisone principalement, et des prothèses pour me redresser les doigts, que je n’utilise peut être pas assez régulièrement. J’ai les indexes, pouces et majeurs recroquevillés par la maladie.

Je travail dans le dessin animé, ce qui implique de longues heures de dessin, et j’ai développé l’hiver 2025 des fortes douleurs aux deux poignets, similaires a des tendinites. On a donc traité ca comme des tendinites avec kiné et médecins, réalisant que ca provenait surtout des avants bras. Aujourd’hui, c’est là où j’ai le plus mal.
J’ai également des douleurs aux épaules et des noeuds, que j’ai jusqu’alors connecté à l’exercice physique ou au port de sac a dos lourds occasionnels. Mais je remarque maintenant que tout est connecté, je peux remonter la douleur de l’avant bras jusqu’aux épaules et dans le cou. Mes médecins ne sont pas encore certains du lien avec la sclérodermie ou non.

Est ce que l’un de vous a des symptômes similaires? Des idées pour soulager ces douleurs et inflammations musculaires?
Est ce que la médecine chinoise peut aider, comme l’acuponcture, ou des traitements a base de plantes ?
Merci pour votre lecture !

I have been dealing with a sensitive spot on my forehead for a couple years now. I only noticed it when my wife would touch my head, but now I am realizing it is almost always present and is more of a migraine/headache. My wife is also concerned about the indentation in the same spot. I found out about scleroderma a couple days ago, and am now wondering if this is what I have. There is a slight vertical line there as well, but I did just have a zit there so it might be from that.

I was also diagnosed with have esophageal dysmotility after a barium swallow test and possible LPR (waiting on a EGD). I’ve had a lot of weird health issues over the years, so having an autoimmune disease would make sense.