Patient Comments: Scleroderma - Describe Your Experience

Please describe your experience with scleroderma.

Comment from: OBF1983, 25-34 Female (Patient) Published: November 29

I am 25 years old and was diagnosed with scleroderma in May of 2008, although my symptoms had started probably a year or so before that. When I first had trouble, I went to my GP, and she told me to cut back on salt and lose weight. Three times I went back to the doctor and got the same response, even though her advice wasn't helping. I was finally referred to a rheumatologist who ran numerous tests that all came back normal. When my skin began to thicken, and I developed ulcers on my knuckles, she sent me to a dermatologist. There, they did a skin biopsy and diagnosed me with scleroderma. It has been a really rough year. I miss a lot of work, I am in constant pain, and I just feel down a lot of the time.

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Comment from: Erin, 19-24 Female (Patient) Published: November 18

I was diagnosed with scleroderma when I was in elementary school. I started developing skin patches on my right calf, then my right thigh, my right buttock, and then the right side of my ribs. It had been itchy, and after a while, I lost fat in those areas with a large amount of discoloration. Being that I was only in elementary school, I grew up being very self-conscious and insecure about my scars. I, of course, had other problems, such as gastrointestinal ones, and I still do. But thankfully, the disease hasn't spread further or affected my internal organs. I am now 20 years old, and while I would like to say it has made me stronger, I still feel very insecure and unsure of what to tell those who see my scars and think they are bruises or burns. It could be a lot worse, but the external scars are so damaging to my ego. I am considering plastic surgery to see if they can't help fix the lesions.

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Comment from: JP, 45-54 Female (Patient) Published: November 18

I was diagnosed with CREST Syndrome in 1985. I have had many different complications. Leg ulcers have been my No. 1 problem. I have been doing well, and all my medications have been decreased until just this past week. I have been experiencing shortness of breath. I went to my regular physician and they checked my heart and pulmonary functions. I just went to my regular appointment for my rheumatoid arthritis (RA) and had taken along copies of all my tests. My doctor said they were looking at me like a regular person with shortness of breath and not a scleroderma patient. He increased my medication, and I am feeling better and hoping I didn't wait too long and have damaged my lungs. I just wanted others to be aware and not hesitate to call the doctor they see regularly for their scleroderma when you have serious symptoms.

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Comment from: Adelene, 25-34 Female (Patient) Published: November 13

Last year, I was infected with scleroderma. It mostly affected my arms and chest. The skin on the infected areas is red. I had an uneven skin tone. My finger and toe tips would turn purplish when cold. I even had difficulty in stretching my arms straight. It was very troublesome for me, as people had been questioning about my abnormal looking skin. So, I had been wearing long-sleeve clothes to cover up myself most of the time. I had gone for traditional, medical and nutritional healings. From that day forward, I changed to a healthier lifestyle. Besides, taking medicines by doctors, I began to take lots of nutritional food and supplements, such as fruits and vegetable enzymes, strath herbal yeast elixir, vitamin E, etc. I even took up tai chi lessons to keep myself fit. I applied virgin coconut oil and massage my arms every morning and night. I pray hard to God for healing day and night. Gradually, my skin condition began to improve. I realized that I have became a more optimistic and strong person. Although I have now fully recovered, I still continue to live a healthy lifestyle. I feel more confident with my looks now. I had faced lots of difficulties when having scleroderma, but it has made me a tough person now. I would also like to encourage people who are having such sickness not to give up easily. There is always hope.

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Comment from: csr, 55-64 Female (Patient) Published: October 24

I have scleroderma on my left lower leg. It started as a small patch after knee replacement and has gradually increased in size.It has been a most difficult situation but one I face head on. I refuse to let it keep me from enjoying my life. I have a small area on my right leg that is also beginning to form. I truly have not been advised as to anything I can do. I do believe that my esophagus is also involved, but was not aware until visiting your sight. Every time I have a flare, these areas become very inflamed.

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Scleroderma - Symptoms and Signs Question: What are your scleroderma symptoms and signs?
Scleroderma - Treatment Question: What kinds of treatment, therapy, or medication have you used to manage symptoms of scleroderma?
Scleroderma - Types Question: What type of scleroderma do you, a friend, or relative have? Please share your story.

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