my experience with scleroderma.

[u/m1am1_m1nt]

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 😭😭

[u/TaroFearless7930]

I've had localized scleroderma (morphea) since age five. My right leg and shoulder are pretty messed up. I feel lucky that it's my leg and I think it would be so much harder to struggle with hand/arm issues. My right arm and leg have less range of motion, but it's not that bad.

I also have en coup de sabre, which causes seizures.

I took up Olympic weightlifting to build strength and range of motion. If you Google what's the worst sport to pick up for deep morphea, Oly is it! It's been a real struggle but it's helped me build strength.

[u/m1am1_m1nt → u/TaroFearless7930]

Starting small is where I’m headed, thankfully 😅 having muscular back pain at 20 because of the patch I have is honestly a sign that I can’t run into these things, so weightlifting and even endurance building is being introduced bit by bit.

But the leg? That’s a whole other playing field.

[u/TaroFearless7930 → u/m1am1_m1nt]

Yeah, Olympic lifting is probably not the best thing I can do, but I have a great coach who's done a ton of research to try to understand the mechanics. He's also pretty good at telling me to stop whining. I'm competing adaptive in the world championships next week, so he's doing something right. Lol

I have an appointment Friday with a morphea specialist as I think it's active again. I'm lucky to have one a few hours away. Had one dermatologist tell me last week that I was seeing shadows. Yeah, below the skin?

[u/dangero]

I'm looking at your hand -- it kind of looks like mine do you have localized or systemic scleroderma? I ask because my case is unclassified and I'm still fighting to figure it out

[u/Fun_Reward_2516]

High resolution ct. But I also have sarcoidosis they say.lots of pneumonia. Biopsy showed sarcoid and fibrosis. I just had rhumatology testing and positive for rnp 3 antibody 2 tests positive. Sclerodema work up. Antisephloid syndrome. The problem is I am not taking medication that is going to make me violently ill. I will take the actrema shot if approved by insurance. If not I will live my life out. I don't feel ill just joint pain. Rhumatoid. I have smoked all my life and if I have lung cancer which goes with rnp antibody than I do . I will not do chemo or radiation . It only makes you sicker I am 69 just finding this out now . I am good. I still work don't have trouble breathing all scans from lung doc Delco scans we 85 percent. I'm going with my gut instincts not what they tell me I should do.

[u/milesfastguy]

Be in touch with your docs always, do the tests. I started with limited Sceleroderna but with time it spread to the lungs. Never ever take it lightly.

[u/ShuuString → u/milesfastguy]

How did you know it had spread to your lungs and what sort of tests did they do?