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Does your child have VWM/CACH? Is it really that rare?-Worried!

Missymm4
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I am desperatly searching for any one at all, anywhere who has or had a child with VWM/CACH! I just recently subscribed to this website and am very impressed with how much people know on here about Leukodystrophy. So far only 2 people have contacted me reguarding having a child with this disease. I am starting to wonder if this is really that rare of a disease! If so, I am scared. Also I would like to get some information on how to get a website for my child like I have seen for so many other children on here. I have been using my myspace site as his website. If anyone could help me please do.
-Melissa

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Leukodystrophies Leukodystrophy

3 replies

MBA28

I am very sorry to hear about your situation with CACH. My daughter was diagnosed with CACH at the the National Institutes of Health about 14 years ago. I cannot tell you how rare it is compared to the other Leukodystrophies. One thing in our favor is that scientists have finally identified all of the genes in the gnome project and can now identify the exact gene causing the CACH. Until that time my daughter, Kelly, was diagnosed at NIH as having Ovarioleukodystrophy. At that time there were only about 7 other people diagnosed with that disease -giving us little hope that anyone would try to find a cure or treatment for such a limited group of people. But, after the gnome project, Kelly's blood was run through the system and she was found to be part of a larger group of Leukodystrophies so there may be some hope afterall. So far scientists have developed a mouse with the same disease and it will be use in helping to find a treatment; hopefully in time to help us all. (248-681-0752)

lexismom

Hi My name is Sherry and I have a 6yr. daughter with CACH. I also am a recovering addict of 4 years. I would love to talk to you more.

Missymm4

Hi Sherry,
I will have 1yr on the 27th of this month. Where do you live? I live in Wheelersburg, Oh. You can email me at mmm.lilly@live.com we can exchange information there if you want.
Missy

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