Visit to the MDA clinic

[Guest guest]

Hi..My name is JoAnn, I have CMT1A as does my daughter (23) and my

grandson Hunter (3). I live a little over an hour south of downtown Chicago,

where I go to the MDA clinic at Northwestern University. We left home today at

9:30am and got home after 6:00pm. It was way too long of a day for me! I

discussed with my neurologist about possible surgury on my right ankle (I

previously had a tendon transfer and had it scoped over 10 years ago and before

I knew had CMT). He pretty much vetoed that idea, which actually was kind of a

relief. He said I could be devoloping a " Charcot joint " , so I will have to do

some research about that. I also asked the genetic counselor to prepare a

letter to send to family members about the possibilty of having a genetic

disorder, I had been sitting on the fence with that for 6 years. I also

discussed with my MDA rep Hunter's upcoming meeting with the school district

(he's having an evaluation for services in Sept.)The MDA reps can arrange to

attend 504 and IEP meetings with you in an advocate role. They know what to ask

for in regard to services, etc. That is a relief!. My daughter and I are

planning to go to Wayne State after she has the new baby, due in Februaury. She

has a very difficult pregnancy with Hunter, I pray this time is easier for her.

Hunter goes the the orthopdic surgeon at the end of the month. He saw the

neurologist from the pediatric MDA clinic at Rush Univeristy on the 9th. He is

having genetic testing done tomarrow, and thank God MDA is paying for it. It's

hard to describe how I feel about that little guy being affected at such a young

age, watching him fall and struggle with things. I have had no experience with

the pediatric side of CMT, my daughter and I were diagnosed together, she was 16

and I was 38. I know this message is rather long, I apologize. Please keep us

in our prayers, you all are in mine.

JoAnn Haase