I am writing to tell you that I enjoyed myself at the Symposium. I found the panel especially interesting when I was chosen to participate on the panel. I hope I was able to help or give ideas to parents.
I also found the teen discussion quite informative. For example, I learned that once I am older and married, I can have kids. If my husband is a carrier then our children will have classic MSUD. That is, since Iâm a carrier also. If he is not a carrier then our children will only be carriers and not have the disease. I also learned that there is a cow in Australia that has MSUD, and scientists are doing studies, and might have a cure for this disease. I surely hope they do.
I learned how to deal with MSUD. And finally, I learned how people react to those who have MSUD and how to deal with them. This will come in handy.
For example, I meet other kids in school and we start to talk. When I tell them I have MSUD, they call me a liar. So instead of getting mad, I prove it to them by showing them my medic alert bracelet and information card. When they realize it is true, they think it is weird. But they become my friend because they think it is neat that they have a friend with something no one else has.
To conclude, I must tell you, it is nice to know someone who not only has MSUD, but who understands what I am going through. This is one journey I will always remember.
Diana is a busy, active girl. She also served on a panel at the Symposium. She and Jessica Shaffer were the teens along with two mothers on the panel, Sandy Bulcher and Kay Larsen, who fielded questions from the audience.
Sharing - Diana at the Symposium
- Written by Diana J. Blum