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Cindy's Story

I am actually posting mostly for my son, but also myself.

I have had to be on prednisone for 5 years because of pulmonary fibrosis, so have Cushing Syndrome from that.

For several I noticed my son going downhill terribly. His muscular well-toned body turned chubby and lost muscle mass. His abdomen ballooned and he gained over 50 lb. developing severe stretch marks. He was tired, had headaches, rashes, and eventually his skin got so thin it began severely tearing badly enough to require numerous grafts from only minor bumps and abrasions. He also developed the moon face and buffalo hump. I kept telling doctor after doctor I thought he had Cushing disease (I am also a medical transcriptionist so had studied this disease). None of them listened, some did not acknowledge my comment, some did simple blood tests, which we later found out would not have diagnosed it.

Anyway after numerous grafts, and 2 years of me trying to convince a doctor, one finally listened and sent him to an endocrinologist. She looked at picture taken his senior year in high school (5 years previous), looked at his huge abdomen and deteriorated muscle tone, and scarred legs from numerous grafts and agreed, "I believe you are right, I think your son has Cushing's disease."

Thank God, my persistence finally paid off. They did the tests and saw the pituitary tumor. He had surgery in December of 2000. He has since lost over 50 lbs. In the meantime, he also broke his hip, not from a fall but a simple stress fracture. She and the surgeon figured he had had it for 5 years. His body had deteriorated badly. But he is my hero. He never missed a day of work with his disease. He never complained about being tired, fat, and constantly needing grafts. He is such a fine, strong, young man. The doctors fell in love with this good-natured, humorous, happy boy. They did not hardly believe he had continued to work throughout this whole time. He is doing fine. He goes to his appointments for MRI's of the brain and blood tests. His attitude is marvelous. He is single but whoever marries him, will have a wonderful man. I am so proud of him. He is getting another bone scan next week, he has been on Fosamax to rebuild bones.

This is a very nice board. I want to wish everyone well. My prayers are with everyone. I have a lot more details but this is already lengthy so I will not exhaust anyone by reading it. I am wondering if there are any facts and figures on the recurrence rate.

Bye for this time.

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