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In 1996 when I was 16, I was diagnosed with Cushing's Syndrome. Before being diagnosed I was seeing a dermatologist for a severe acne problem. The dermatologist noticed that I had a more than average amount of facial hair and he and my mother assumed it was due to me having some Mexican heritage. After a few months of acne treatment, the dermatologist suggested that I go to an endocrinologist. I had also been seeing a pediatrician because my menstrual cycle had stopped. After numerous tests, I was finally diagnosed with Cushing's. In the summer of 1996 I went to Portland for transsphenoidal surgery. The first surgery was unsuccessful and the doctors and I agreed it would be best if the surgery was repeated. The second surgery was thought to be a success. After spending 11 days in the hospital in Portland, I was allowed to go home. Soon after the second surgery all my symptoms were reversing and I felt much better. I was then able to live a normal healthy teenage life again.
In the summer of 1997 I noticed that my appetite was decreasing and I started getting severe heartburn. I was always complaining about not feeling well until finally my parents took me in for a doctor's appointment. After a blood test, it was determined that I had a relapse of Cushing's. Once again transsphenoidal surgery was recommended and once again it was unsuccessful. At that point the doctors told me I basically had two options, radiation or a bilateral adrenalectomy. Being 18 years of age I decided to have the adrenalectomy because the radiation therapy would more than likely destroy my ability to have children later in life. At this point I still would like to have that option open. In February, my adrenals were removed and now I am forever dependant on hydrocortisone and florinef.
It has been a difficult struggle for me, especially in the last year. I am a senior in high school and am enrolled in all the advanced classes. I was constantly stressed out, tired and my grades, which were once mostly A's, were slipping. None of my teachers fully understood what I was going through or what my situation was even though I tried to explain it to them. It has been hard work getting caught up in all my classes after missing so much school for doctors appointments but sure enough, I am passing all my classes and I got accepted to all three colleges I applied to.
For everyone that suffers from Cushing's, or any other hardship, I would like to say that you can make it if you have hope and if you're strong. As a nurse in San Francisco once said to me after my third unsuccessful surgery, "it's just another bump in the road." Things get better. Trust me, I am living proof.
If anyone wants to share their experience or needs encouragement, feel free to contact me. |
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