12 Things to Care for When You Have Scleroderma

11. Sexual Function

shutterstock_1870968

Sexual function is usually affected by scleroderma but it’s rarely discussed or managed. Erectile dysfunction is probable among men and dryness of the vaginal area is common among women.

12. Quality of Life

shutterstock_55285051

Acknowledging the physical, social and emotional toll scleroderma takes and adapting to your new needs can improve your quality of life.

Despite there being approximately 300,000 people in the U.S. who have scleroderma, it seems that many people are either completely unaware of the disease or are confused as to what the disease actually is.

Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

20 comments

    • Tim Bossie says:

      Thank you for reading Mary. 🙂 We hope that you were able to get some answers and even some comfort from it.

  1. Kathryn says:

    Good piece, informative and succinct. I was diagnosed essentially by accident, by a sharp-eyed cardiologist, after a number of years being plagued by seemingly unrelated symptoms. I spent a long time feeling ashamed and guilty, thinking I had done something to myself, through neglect or improper eating, etc. Once it was “named,” all of the puzzle pieces fell into place and I stopped feeling like a freak of nature. Would Hopkins ever consider offering a webinar on scleroderma?

  2. Sherry Ellis says:

    Very informative and accurate based on my experience with Scleroderma. Mine initiated acutely in 2007 and so far well managed on current treatment plan. However, I have had to endure some lifestyle changes due to this disease, I refuse to give in.

    • Laurie says:

      Hi Sherry – Can you provide info on what your current treatment plan is? It’s encouraging to read you’ve so far managed well.

  3. Laura Mollrich says:

    I was diagnosed in 1989 with Lupus Overlap (SLE; Scleroderma; and RA). Have had numerous organ involvement from SLE but now the CREST Scleroderma is causing the most of my issues–GI/Raynaud’s. I just had a Calcinosis Excision and Digital Sympathectomy. Recovery is not fun…or easy but I will make it! I knew all there is to know about SLE but had no idea what Scleroderma was and what it does to the body. I am very thankful to have found the Scleroderma News website. Thank you for helping us to understand this debilitating disease.

  4. Marilyn Gigliuto says:

    Very comforting and informative,do not know anyone with scleroderma.So it’s such a great aid to read up onThank you all.

  5. Helena T says:

    I was diagnosed with diffuse systemic sclerosis in July 2017 after 2.5 years of symptoms. I had trekked from doctor to doctor who failed to correctly diagnose me. Thanks for all the information you put up. It’s very useful. It’s hard for people close to me to understand a disease they mostly can’t see the symptoms of.

  6. Marcela Fernandez says:

    I have been living with scleroderma since I was 12. I am now 49 and doing relativly well. I have a full time job teaching and I have a 16 uear old son. Living with scleroderma is a struggle but I plan to continue living my life to the fullest. Thank you for helping to build awareness.

  7. Sandee sparks says:

    A very astute GP was concerned with my daughter’s syptoms Oct. 2017 after some blood tests and got us to a RA doc. He is treating her aggressively (she’s 24). She is on cellcept and prednisone. She is making changing in her life. We are now waiting to get into the Cleveland Clinic in Tampa. I find the articles and videos this website offers to be very helpful and insightful. I enjoy the blogs. Thank you

  8. Rachel says:

    It is a rare disease that typically forms in people at an old age… its funny, like Marcela I was also diagnosed as a child (8), I keep meeting more people who are diagnosed as children than as adults, and even though its a “rare” disease” there are SO many of us survivors 😀

  9. dorothy says:

    besides the skin and figure tips’ problems along with years of GURd. I now find that my stomach is a compost and I need to go on a liquid diet for a month. need help with suggestion on how to do this and keep my weight and energy. where can I find help. anyone else doing a liquid diet? also have had 4 kidney transplants but never told it was due to sclodema

    • Jersey Jane says:

      Just diagnosed with scleroderma. Have had raynauds, dry mouth and eyes, red dots and small mouth for years. Gerd is relatively new. However shocker was repeated ‘episodes’ (lots of pain, vomiting, etc.) plus 30 lb weight loss without trying) only to find that small intestine had been blocked by lots of scar tissue (from old appendectomy) for 2-3 years. Since operation to remove 2 months ago, system finally working like normal. If I/we grow unwanted scar tissue, what’s next?

  10. Elaine says:

    Was diagnosed with severe RA Jan. 1, 2018 and have been seeing a Rheumatologist. He and other people have noticed my blueish/purple fingers inflamed fingers and I thought nothing of it…thought the pain and weakness in my hands, feet and back was ‘one of those things’ my Rheumy thought I had Lupus at first after 3 blood tests, then after more blood tests he said I have Scleroderma. I will be seeing a specialist next month and have been doing as much research as I can about the disease. For the past 7 years, I haven’t understood why I’m tired all the time, my hands and feet are always cold, I’m so sick and tired of ALWAYS being sick with colds, flu, stomach viruses and bronchitis. I also have severe acid reflux and wake up choking from aspirating stomach acid while I sleep. Never thought to ‘add it all up’ and that it would point to this disease.

    Looking forward to getting some answers from the Scleroderma Specialist next month and hopefully she can help me.

  11. Lisa M. says:

    I went undiagnosed for over 25 years. We tried, for 10 years, to find a good dr, who would figure out what was really going on, but after one labeled me with Fibromyalgia, nobody else seemed to be motivated further. During those years and those appointments, not one doctor touched me with their hands during “exams”, even though my symptoms never matched any that I read about regarding Fibromyalgia. Thankfully, we finally moved to WA state, and soon after, my new RA diagnosed me with Multiple Connective Tissue Disease: Systemic Lupus, Scleroderma, and myositis. I just have yet to find someone who actually treats scleraderma. I do live in a small community.
    I haven’t slept all night in over 5 years, and the pain has spread much further, and has changed actually to something that I can’t control with meds, position, acupunture, etc. I do need more help than I have, yet since I finally have some, I don’t want to be ungrateful, or complain.

  12. Diane says:

    Hi, my name is Diane and I test positive for scleroderma and ANA is positive,but my doctor doesn’t treat me . I am in a lot of pain I always think it’s my new medicine for blood pressure, which I’ve tried about eight different ones. I’m starting to think it’s all scleroderma causing my symptoms. My legs hurt, my arms raynauds upper Gi problems. Can anyone help. Thank you.
    Diane

Leave a Comment

Your email address will not be published. Required fields are marked *