I will need to get permission from my sister- and brother-in-law before I can send you any contact info, but I'm sure they will be interested in putting Rosie's name and information on the registry. I will speak to them as soon as I can and get back to you.
Thank you. The Mayo Clinic in MN will be doing it. Are there specific questions we should be asking them on how this will be done? Ethan, our son did have a nerve biopsy done there this month. They also performed an EMG.
Do you have very curley/kinky hair?
Yes. At the moment I have short hairs.
What were your first symptoms?
worse Going.No more upstairs without helper.
What is your status currently?
Im a wheelchairdriver
Are you wheelchair bound?
Yes
If so, at what age?
Since 8 Years
At what age did you need a walker, full-time?
When I was 13 years old
Do you have upper body mobility?
Nothing anymore
Can you speak? Can you swallow, or do you need a feeding tube?
I can speak. Normaly swallow.
Can you control your urine and bowl movements?
In summer Yes in Winter when legs cold No
Have you ever had a seizure?
Yes
If so, at what age did they begin?
The last one when I was 8 years old.
Do you have loss of mental function?
No
Dementia?
NO
How was the diagnosis or GAN determined?
hi
thanks for welcome
slowly it got worser
at begin walking was more difficult, than walking the stairs got more difficult
more and more i felt on my knees..., than i had to use fixation (hope its the correct word) for the legs and crutches
and scince my apprenticeship in 97 i use a wheelc hair because of more mobility
at the beginning we were at so many doctors and in clinics. they had the name of the affliction very bfast but no therapy.
greetings
Miruko
Yes, I enjoyed High School, but I am getting discouraged about going to college, and getting a degree. What's the use! In my spare time, I play on the computer because that's the only thing I can do by myself. With help, I enjoy selling snacks to earn a little cash since I can't get a job. It really stinks not being able to get a job.
"Donate what you Can to cure GAN."
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I will need to get permission from my sister- and brother-in-law before I can send you any contact info, but I'm sure they will be interested in putting Rosie's name and information on the registry. I will speak to them as soon as I can and get back to you.
Yes. At the moment I have short hairs.
What were your first symptoms?
worse Going.No more upstairs without helper.
What is your status currently?
Im a wheelchairdriver
Are you wheelchair bound?
Yes
If so, at what age?
Since 8 Years
At what age did you need a walker, full-time?
When I was 13 years old
Do you have upper body mobility?
Nothing anymore
Can you speak? Can you swallow, or do you need a feeding tube?
I can speak. Normaly swallow.
Can you control your urine and bowl movements?
In summer Yes in Winter when legs cold No
Have you ever had a seizure?
Yes
If so, at what age did they begin?
The last one when I was 8 years old.
Do you have loss of mental function?
No
Dementia?
NO
How was the diagnosis or GAN determined?
Have you had a nerve biopsy?
Yes on the left leg.
I was 4 years old when i felt more and more on my knees. After a Doctor visiting they mad a biopsy on left leg and diagnosded GAN
And you.
thanks for welcome
slowly it got worser
at begin walking was more difficult, than walking the stairs got more difficult
more and more i felt on my knees..., than i had to use fixation (hope its the correct word) for the legs and crutches
and scince my apprenticeship in 97 i use a wheelc hair because of more mobility
at the beginning we were at so many doctors and in clinics. they had the name of the affliction very bfast but no therapy.
greetings
Miruko
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