The NIH has been a real champion of cystinosis; they were instrumental in the development of cysteamine. Cysteamine is the drug I take to slow the progression of cystinosis. The NIH is conducting a long term study of cystinosis and I was happy to be a part of it. Mommy and Daddy ran me about the building to see a lot of doctors who looked at my eyes, bones, teeth and kidneys. All things considered, the doctors thought I was doing great and told me to keep up the good work taking all my medicine.
My Trip to NIH
Brooke in the DEXA scan
