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June 2009 - Need information from GAN families!

Started Jun 3

GAN - gene sequencing / mutation analysis
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Started this discussion. Last reply by Gigi Jul. 30, 2008.

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At 10:49pm on June 28, 2009, Rebecca Holton said…: Hi Magaen,

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.

At 3:17pm on July 30, 2008, Gigi said…: 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.

At 4:23pm on July 15, 2008, Matthias said…: 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?

Have you had a nerve biopsy?
Yes on the left leg.

At 8:23am on July 10, 2008, Matthias said…: HEY

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.

At 6:27am on July 10, 2008, Matthias said…: Hi there

At 3:11pm on July 9, 2008, Magaen Bates said…: How were you diagnosed, through your symptoms or a biopsy or blood test?

At 1:44pm on July 9, 2008, Mirko said…: 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

At 1:29pm on July 1, 2008, Renee Spears said…: What is supposed to be in the "events" section of this site and please tell me about the symposium.

At 12:23pm on June 17, 2008, Renee Spears said…: Can I email you a pic of my family? I will need your email address. I will get back to you later. What time zone are you in?

At 12:05pm on June 17, 2008, Renee Spears said…: 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.

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About Me: Parent of GAN Child

About Me:: I am a full-time mommy. I have three children. Lottyn is my oldest son. He is 10 years old and was diagnosed with GAN in December of 2006. Parker is my sweet middle child and he is 7 years old. Lily Grace is our baby and she is 5.