Two months after I was born the doctors noticed that my growth rate was very slow. Unknown to my mother the doctors made a note in my medical chart that my mom was not feeding me. Of course, this was not true.
As time went on it became apparent that my growth rate was not normal. My body was very stiff and rigid so my mother took me back to the doctor and my first biopsy was performed. At this time I was diagnosed with scleroderma and my parents were told that this was a terminal disease.
At age six I was referred to the National Institute of Health in Washington D.C. to see if I was a candidate for growth hormone treatment. It was decided that I was not. Also the doctors were not sure if my diagnosis was correct. I was developing severe contractures in my legs and also my left foot was deformed. The next course of treatment was to place my left leg in a cast. Every night my mother was to increase the size of the wedge behind my knee. It was so painful that the whole idea was discontinued. At this point the doctors could not decide what my diagnosis was.
We went to Bethesda Naval Hospital where the doctors gave me a 'trash can diagnosis', which meant that I had a connective tissue disease but they could not identify which one, and that they could treat the symptoms but not the illness.
My next course of treatment began with several surgeries. The first on my left foot to lengthen my heel cord. The second was on my left knee to release my ham strings under my knee. After that I had a total reconstruction on my left foot to improve my walking. This basically was the only surgery that improved my mobility. I continue to have severe contractures in my joints. My mobility is limited and again another surgery was performed on my left knee to limit my contractures in my left leg. It was also mentioned that hip surgery may be needed in the future.
Most doctors I see are interested in the condition when they see me, however, they do not choose to monitor my condition. One doctor dismissed me as a patient because she felt there was nothing she could do to help me. I do, however, have a doctor now that takes an interest in me as a patient. He monitors my lung capacity which at the moment is at fifty-seven percent. I am also at risk for pulmonary fibrosis and need to be checked periodically.
My current health insurance is Medicare and Medicaid. I receive SSDI (Social Security Disability Income). None of my medications are currently being covered. Medicare will not pay for my lung functioning tests, and Medicaid will only pay for my medications when I meet a very large spend down every six months.
I have had several staph infections in my left foot. I also need regular foot care which is not covered under my Medicare or Medicaid plan. I try to manage my condition as best I can even though my mobility is limited. I do get out and sometimes travel as I am able to drive but I am uncertain as to what my general health will be in the future.
The one thing I have found about this particular illness is that its progress can not be predicted.
I mange my life the best I can. And try to enjoy each day. It is important to have a positive outlook on life and remember that you are not alone with this disease.
|Daniel B. Koch
New email [email protected]
Story posted 10-9-03
New email address needed 07-18-06 SLE
New email posted 07-17-09 SLE
Story Editor: Judith Devlin
Skeletal Involvement: Contractures
National Institute of Health
Overlap Syndrome (MCTD)
Reading Voices of Scleroderma Books: Diana Kramer.
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