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Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM)
Digestion problems with Leukodystrophy (CACH)
- By lexismom · New reply November 14, 2009
- 5 replies
- Hi everyone! My six year old daughter has CACH, one of the more rare forms of Leukodystrophy. She has always had problems with digesting her formula. We had to place a Mic-key button when she was two ...
QUESTION- VWM-GENETICS
- By mommyloveswyatt · New reply October 27, 2009
- 1 reply
- I have a question about VWM and the genetic parts of it. We just got our sons blood taken today to confirm that he has VWM disease (vanishing white matter) and i know that when we get the results back ...
New here, looking for families with VWM disease
- By mommyloveswyatt · New reply October 23, 2009
- 2 replies
- Hi, My name is Felishia, i have a son named Wyatt who is presumed to have VWM disease (doing the test to confirm on monday). Im looking to talk with some families who have already been where we are right ...
Sleep Medicine For 7 yr old with VWM
- By jpragon · New reply July 1, 2009
- 3 replies
- Hi, my daughter has a very hard time sleeping. I have tried over the counter sleep aids but nothing seems to help. The doctors really don't know what to tell us. She sleeps a couple of hours a night...so ...
My 3yr. old son was diagnosed on Nov. 20,2008!
- By Missymm4 · New reply June 28, 2009
- 5 replies
- My name is Melissa. I have a 3 yr. old son who after 8 mo. of testing has just recently (Nov. 20) been diagnosed with Vanishing White Matter Disease (Childhood ataxia with diffuse central nervous system ...
Financial resources
- By mm · New reply May 24, 2009
- 4 replies
- My daughter was diagnosed last year with a Leukodystrophy. Since this is all new to us, does anyone have suggestion on what services are out there? We are caught in the middle. Not wealthy enough to pay ...
Do you have a child diagnosed with CACH?
- By lexismom · New reply March 15, 2009
- 6 replies
- My daughter was diagnosed with CACH in 2004, she was 14mths old, She is now 6yrs old. To this day there is still little discussion about this type of Leukodystrophy. I would love to talk with someone ...
Does your child have VWM/CACH? Is it really that rare?-Worried!
- By Missymm4 · New reply March 3, 2009
- 3 replies
- 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 ...
