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In her own words: living with scleroderma

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Judy*, a mother of six children and grandmother of ten grandchildren, was diagnosed with scleroderma four years ago. Fortunately, the scleroderma hasn't affected her internal tissues, so she is able to manage her condition with pain medication. She continues to maintain an active life with her husband, volunteering in many community activities. They will soon be moving into a duplex adjacent to her daughter’s home in case her condition worsens.
What was your first sign that something was wrong? What symptoms did you experience?
One of the first signs was that my hands got really cold and were turning white. Later, I had swelling in my hands, legs, and ankles. My legs would sometimes feel really hot. At night before I went to bed I would soak them in real cold water. These symptoms went on for about 6 to 9 months. I wondered, "what in the world is wrong with me."
What was the diagnosis experience like?
It was quite prolonged. When I first went to my doctor, he suspected that it was several other things. One thing that showed up was that I had high blood pressure, so he gave me some medication for that. That didn’t really take care of the symptoms I was having. Along with the high blood pressure, I was having swelling of my ankles and legs, kind of like edema, so he gave me some diuretics. Then he did some blood tests, and as soon as he did the blood tests, he said, “I think you have scleroderma.” He referred me to a rheumatologist, and he agreed with the diagnosis. This whole process took about three months.
What was your initial and then longer-term reaction to the diagnosis?
At first I was relieved to know that it was something that could be treated. Since the doctors didn’t really tell me too much about it, I got much of my information from the Internet. There is a scleroderma foundation that provides a lot of information about the disease.
How is scleroderma treated?
Scleroderma affects the skin and tissues so you have kind of an arthritic reaction, and also can affect the internal systems, such as the digestive system. For me, none of the internal systems have been affected. Therefore, when I went to the rheumatologist, he said he would just give me something for the pain, so I take Aleve twice a day. If it were affecting my internal tissues, he would prescribe a more aggressive treatment. The Aleve helps with the pain. I go back and see the rheumatologist every six months.
Did you have to make any lifestyle or dietary changes in response to having scleroderma?
No, because I think mine is pretty mild.
Did you seek any type of emotional support?
My family and husband have been very supportive. There are scleroderma support groups, but I didn’t really feel the need to go since my condition has improved. I also have a niece who is a nurse, and she helps me understand more about it.
Does scleroderma have an impact on your family?
We are retirement age, so we were in the process of deciding where to live. My daughter and her husband offered to build a duplex on their property for us to move into. We thought about it, and decided it was probably a good idea. They've designed it to make getting around easier for me if my condition worsens. It should be completed this Spring. It’s a very nice thing for them to do for us.
What advice would you give to anyone living with scleroderma?
At first it's pretty scary, but try to stay hopeful. It helps to find out as much information as you can. I felt better when I understood more about what it was.
*Not her real name
Interviews were conducted in the past and may not reflect current standards and practices in medicine. Talk to your doctor to learn more about how this condition is diagnosed and managed today and what treatment approaches are right for you.