What is Shwachman-Diamond syndrome SDS
Shwachman-Diamond syndrome (SDS) is a rare congenital disorder characterized by exocrine pancreatic insufficiency, bone marrow dysfunction, skeletal abnormalities, and short statur...
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My daughters life with Schwachman Syndrome
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My daughter was diagnosed with Schwachmans syndrome back in 1985 when she had just turned 2 years old. She weighed 18 lb on her 1st birthday and 17lb on her 2nd birthday.
She only had 6-8% pancreatic function and was put on 30 pancrease tablets per day.She also has bone marrow dysfunction , low white blood cell count,and a few more of the symptons that go along with this rare illness. She also had sleep problems, asthma and migraine headaches which personally I think were because of her lack of being able to absorb enough vitamins etc to keep her in general good health. She had to do home schooling when she reached high school level because she missed so much school. Now she is 24 and doing OK.She has a partime job but I think full time would be too much for her.She is very thin and still gets migraines and gets sick easily but maintains a good diet and has lots of rest. Posted on 02/10/08, 06:02 am |
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