The Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration... More about this group
All new and active discussions & journals
Cramps in legs/toes
- By Annlee · New reply 4:52 pm
- Discussion in General discussion · 12 replies
- I starting getting cramps in my legs( from knee down) and toes ( duing the night or early morning) I dont know if its scleroderma related or not, anyone have this problem ...
First Day of Online Journal
- By Valide · Posted 2:32 pm
- Journal · 0 replies
- It has been 7 weeks my Mom has started her immunosuppressive therapy for her systemic scleroderma. She has already been in the hospital twice-one time for an entire week due to a fever. Turns out that ...
Heart question
- By PeggyPansy · New reply 2:23 pm
- Discussion in Systemic scleroderma · 3 replies
- I would like to know what kind of heart problems everyone has and if they have been positively linked to scleroderma. I was diagnosed w/scleroderma in the early 90's and have had very few problems. However ...
Immurane
- By Belair09 · New reply 1:03 pm
- Discussion in Systemic scleroderma · 3 replies
- I just found out my doctors wants to start me on Immuran. Has anyone taken this and has it helped ...
gastroparasis
- By laddybug · New reply 12:15 pm
- Journal · 11 replies
- Just received the results of my gastric emptying test. The doctor said I have "markedly delayed emptying" she called it gastroparasis. She wants to put me on reglan for two weeks in addition to a low ...
John Hopkins may validate AP
- By Christine-2 · New reply 11:12 am
- Discussion in Treatment options · 1 reply
- Hi All; It looks like AP will bein the news.Trouble is that they are crediting a Chinese researcher instead of DR. Brown who started this decades ago. http://www.jhunewsletter.com/home/index. cfm?event=displayArticle&ustory_id=63ceb ...
awareness
- By LiLLTleAnGeL · Posted 10:54 am
- Discussion in Systemic scleroderma · 0 replies
- Hello, My name is Ryan and I have a friend who discovered that her daughter who is 6 years old has systemic scleroderma. I havent known this friend for long but do know it has been hard on her and her ...
Disability Status Decision
- By stacyl531 · New reply 9:35 am
- Discussion in Systemic scleroderma · 7 replies
- Hi - I applied for Disability in August of this year. I just received an email stating a decision has been made on my claim and that I would be notified by mail. I called up the office to see if I could ...
Disability Hearing Next Week/Dizziness
- By mrsbubbles98 · New reply 8:49 am
- Discussion in General discussion · 14 replies
- Hello all: I just want to thank whoever started this website. It has been such a help to me. I feel connected to everyone here. I have scleroderma/MTCD/Raynauds/Barrets Esphogus/Etc. and I am up for a ...
John Hopkins may validate AP
- By Christine-2 · New reply 8:11 am
- Discussion in Treatment options · 1 reply
- Hi All; It looks like AP will bein the news.Trouble is that they are crediting a Chinese researcher instead of DR. Brown who started this decades ago. http://www.jhunewsletter.com/home/index. cfm?event=displayArticle&ustory_id=63ceb ...
itchy skin
- By Coastiewife · New reply yesterday at 11:08 pm
- Discussion in Systemic scleroderma · 5 replies
- Hi there, I am kinda new here and haven't really introduced myself yet but I really need some help!! I am a female, 39, been dx with MCTD in 2005. With very strong SD symptoms, especially my skin. Recently ...
Surprised the Neurologist Today
- By M_McF_M · New reply yesterday at 9:44 pm
- Journal · 12 replies
- The last time I saw my neurologist, he offered me pain medication, when I hadn't complained of pain. The time before that, he told me I had a definitive diagnosis of FSH muscular dystrophy, and that physical ...
Scleroderma Dry Itchy Skin
- By Belair09 · New reply yesterday at 8:14 pm
- Discussion in Systemic scleroderma · 2 replies
- I have had systmeic sleroderma for 7 years and I am doing really good except for my skin. Just recently started itching bad. Anybody have any suggestions ...
2 Yr Old Little Girl with Morphea
- By daniel2009 · New reply yesterday at 7:02 pm
- Discussion in Newly diagnosed · 3 replies
- Does anyone out there have any experience with this horrible issue? She has this in her upper inside thigh. Is there anyone out there that specializes in this so rare form of Scleroderma? Please let us ...
frustrated
- By Invyzabul · New reply yesterday at 2:50 pm
- Discussion in General discussion · 7 replies
- i am just very frustrated. my doctor is saying that all my tests are coming back normal. so, i guess theres nothing wrong with me and my imagination ha crated my hand problems, migraines, gerd, arthritis ...
Being pulled in 3 derections
- By starre · New reply yesterday at 1:41 pm
- Journal · 2 replies
- I have 3 kids a 13 yr old that i need to be involed in because she is a teenager that is starting to like boys and hormones ranging is try to keep her active in dancing and school activities but i find ...
Dentist appt.....Are you kidding me??!!!!!!
- By Terri9967 · New reply yesterday at 12:34 pm
- Journal · 21 replies
- Ok.....went to my new dentist yesterday. After sitting there for 45 min and not being called, I approached the front desk and ask how much longer it was going to be? She told me that the phone repair ...
Pulmonary Hypertension/Heart Cath question
- By Libi · New reply yesterday at 11:47 am
- Discussion in General discussion · 10 replies
- If you have had a heart cath to either diagnose or follow up specifically for Pulmonary Hypertension only were you sedated at all? Even lightly? I was NOT sedated with my last one and from what I'm reading ...
New Drug for Pulmonary Fibrosis
- By ilene64 · New reply yesterday at 8:09 am
- Discussion in Systemic scleroderma · 2 replies
- An announcement was made that the FDA is reviewing a drug called Pirfenidone by InterMune for Pulmonary Fibrosis. I recieved notice though the Coalition For Pulmonary Fibrosis. I don't know how to attatch ...
Calcium deposit
- By SamDeTray-11 · New reply November 6, 2009
- Discussion in General discussion · 1 reply
- on my left forearm needs to be gone its hurting pretty bad for the past few days. I was supose to have it taken off back in the summer time but I decided to wait. Also my elbow is hurting like I have ...
- More »
- New
- Active
- Discussions
- Journals
Sign in to see more
Inspire others
From the Scleroderma Foundation
Scleroderma Foundation on Twitter 
Group leaders
Discussion topics
You
About this group
The Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. The Scleroderma Foundation Support Community is sponsored by the Scleroderma Foundation in partnership with Inspire.