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I have had this letter in my head for a while now but not until recently was I able to even think about actually writing it. I am a 17-year-old senior in high school. I had Cushing's Disease and had surgery at NIH in March of 1999. I am recovering and looking forward to a complete recovery! Since I know that you have heard many stories, I will spare you of hearing yet another.
My mother is a subscriber to the Cushing's newsletter. It was rather neat to see a picture of my three doctors on the cover of the summer '99 issue. Dr. Lafferty, Dr. Stratakis, and Dr. Chrousos have followed me as a patient at NIH. After reading the past newsletters, I noticed that the emphasis is adult-oriented. While I was on the pediatric ward at NIH, I met four other kids with Cushing's and heard stories about many more children from the nurses.
First of all, I think that the board does a great job of putting the letters together and it is very kind and thoughtful of them to spend many hours on them. I feel that I could be of some assistance to the board for ideas on a group that has trouble publicizing awareness for Cushing's. That group of people is children. I know of many children who were diagnosed by persistent parents and the Internet, instead of doctors.
In your summer '99 newsletter, it was suggested to publicize Cushing's in weight loss clinics. I can see where this would be very helpful to adults; however, not many children are referred to those types of places. Pediatricians need to know about Cushing's. Too often weight gain is attributed to a "phase" that a child goes through that their growth will "even them out." While this "phase" may be true for many children, you know all too well about the few that slip through the cracks, the people with Cushing's.
For my science project last year, I made a presentation about Cushing's. Adults were in attendance too and afterwards a woman came up to me and swore that her sister had Cushing's. That comment made me glad that I had decided to share my experience with others, so that in turn others may be helped.
I also think that it is very important for children to focus not on their past (with Cushing's) but on their future and what they have accomplished since receiving treatment, so that they can set a positive example for kids who have not received treatment yet. This could be accomplished by organized chats on the Internet or establishing a pen pal program that pairs children new to the disease with children who have been cured.
I think that it is crucial that the Cushing's Foundation continue to make Cushing's known on more medical web sites, since I have read numerous times in the Wall Street Journal about how more and more people are turning to the web for answers on medical questions.
So in closing, I want to again thank you very much for your continuous effort to get Cushing's out into the open and to encourage you to continue to make more doctors aware of Cushing's. Please consider my proposal, I would like to serve as some kind of child representative so that I can help other kids who are going through or who have gone through Cushing's. I would also like to spread awareness for Cushing's but I know that I need help to achieve this goal. |
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