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Rach's Story

Hi, My name is Rachel,

1st Bout with Cushing's ( Pituitary Macroadema)

I started into Cushing's at age 6 or 7. Ten Different pediatricians told my mother to not feed me so much and dismissed my symptoms to a poor diet. Finally at age 9, I was diagnosed with a pituitary Macroadema (Large Pituitary tumor), Causing Cushing's Disease. At the time my UFC's were in the 400's. I then underwent transphendal surgery. At the time of diagnosis I had gained 120lbs and had a huge Buffalo hump and very hairy face. (Diagnosis time 3 years)

2nd Bout with Cushing's (cyclical Pituitary )

Around 11 I started back into Classic Cushing's symptoms. Buffalo hump, hairy face and rapid weight gain. I went to several doctors. This time the diagnosis was very hard and difficult, for six years my UFC fluctuated weekly from 10- 350. My doctor admited me to the hospital and during my 7 day stay my UFC were; 19, 210, 40, 13,19, and 355. After 6 years and constant testing I was Diagnosed with Cyclical Pituitary Cushing's this Time. At NIH. And finally under went a second transpenodial at age 16. (diagnosis time 6 years)

3rd Bout with Cushing (Pituitary Macroadema)

At 18 I started back into Cushing's this time the diagnosis and treatment was quick I underwent a third transphendal surgery which also failed. So I did Sterostatic radiation treatment on the Pituitary 4 months later. Unfortunately the radiation took 18 months to cure me. At age 18 I also developed ocular problems related to excessive fluid in my skull from tumor compression. I have under gone 5 different eye and back surgery to reduce the fluid pressure. Fortunately my eyes are now in great shape. (diagnosis 6 months treatment time 2.5 years)

I am currently 21 and cured from Cushing's Disease and Hope that I will never have to go through that hell again. Still have a lot of side effects from the years and years of Cushing’s, and always worry I may get Cushing’s again

My hope and prayers are with every person who is going through Cushing's. I know doctors can be one of the most difficult parts of having Cushing's.. Doctors seem to treat patients like they are just fat or crazy. So hang in there, the hardest part is diagnosis. Good luck ( :

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