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I developed Cushing's at the age of twelve and was not diagnosed until almost fifteen. A relative I had not seen in quite some time noticed I was rather obese and had poor growth in height. Since my physical changes had occurred so gradually, my immediate family had not realized the outward appearance had been altered.
In order to determine if I actually had Cushing's Syndrome, many blood and urine tests were performed - blood tests were done on a regular schedule for one week (I was hospitalized during that time) and urine tests were done daily. Due to the time involved in testing, I missed a significant amount of school. After almost a year of thorough physical examinations, hospital stays, and many tests, the endocrinologist from All Children's Hospital (St. Petersburg, FL) diagnosed me with Cushing's Syndrome.
Once it was determined I had Cushing's, the decision for me to undergo surgery was made almost immediately. However, it is worth noting here that when I underwent surgery, the doctors did not find a tumor; so they just cleaned the area very well. After surgery, I remained in the hospital for a week and then went home where I recovered nicely. Once home from this ordeal, the worst finally behind me, my mother and I were still in contact with the doctors and there were trips to the hospital for continual blood and urine testing (for follow-up); this eventually tapered off. The post-surgery medications also decreased gradually. I followed-up with the endocrinologist annually and always received a clean bill of health. Even after I turned eighteen, it was recommended I continue to follow-up annually with an endocrinologist, which I have not followed through with - to this day, at age 33, I believe I remain sign and symptom free of Cushing's.
Previous to this diagnosis and even for a while after, I had a very difficult time attending school because of the open ridicule I faced from my peers and even a teacher, all because of my physical appearance. I learned to deal with my condition and the fears associated with it by listening to my doctors and by accepting the fact that I had to have surgery to get better. I was also pretty open and honest with my family about my feelings. I had a lot of support from my family and that helped me tremendously in dealing with my low self-esteem. It was very difficult for my mom to watch me struggle with this condition and to watch me endure all the tests and examinations. There were times away from me, when I know she would break down and cry, but in front of me, she was always my pillar of strength and support. I also know that my mom had the support of her parents who were always there to help with anything that was needed. I also believe that my faith in God sustained me through the Cushing's experience and that my faith continues to be a source of strength in my life today.
After Cushing's, I came out of my shell, so to speak. I went on to college, received my Master's degree in Social Work in April of 2000 and have been in the field for approximately 4 years. I would very much like to help any one struggling with this disorder, particularly families who are dealing with the illness of a child. Please feel free to contact me.
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