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FRUSTRATED!!!!!!!!!!!!!!!!!!!!!!!
- By myjoshiebaby · New reply 12:09 pm
- Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 12 replies
- For the past year I have seen a decline in my son's mobility. He went from a vibrant toddler to falling all over the place. Two weeks ago, the day after his 4th bday, he fell down the stairs and cut his ...
"HYPOKALEMIA OR LOW POTASSIUM"
- By mandyblue · New reply 9:29 am
- Journal · 15 replies
- I want to share this research information in "My Journal". This is a very long collection of articles, that explains in great detail, about Hypokalemia or Low Potassium. It is for anyone who needs help ...
Heat and AlxD
- By Jelte · New reply yesterday at 10:50 pm
- Discussion in Alexander disease (AxD) - Parents · 9 replies
- Our son, Jelte, is 3 years old and is diagnosed with AlxD in jan 2008. We have had a few warmer days in the Netherlands now. The disease seems to get a bit "worse" at those days. He has more problems ...
15 month daughter undiagnosed
- By cjackson · New reply July 2, 2009
- Journal · 6 replies
- Hello everyone, I was just wondering if any one can relate!! I have a 15 month old daughter who is my specail fighter! She has had feeding issues since day one. She has a unknown leukodystrophy, and infantile ...
Undiagnosed Leukodystrophy
- By Hope4HaileyBug · Posted July 1, 2009
- Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 0 replies
- My youngest daughter, Hailey, was diagnosed with having Leukodystrophy in February of 2007, but to date as still gone undiagnosed to which one she has. She has been tested for 33 of the 34 different types ...
Sleep Medicine For 7 yr old with VWM
- By jpragon · New reply July 1, 2009
- Discussion in Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM) · 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 ...
chenodeoxycholic acid vs ursodeoxycholic acid in the treatment of CTX
- By Avril · New reply July 1, 2009
- Journal · 9 replies
- the doctors know nothing in the uk and treat my mum as an unknown and my auntie was a guinee pig who died needlessly because of their lack of knowledge im sure i can help things be better for my Mum i ...
My name is Richard , My grandson got Alexander Disease.
- By hudels2 · New reply July 1, 2009
- Discussion in Alexander disease (AxD) - Parents · 1 reply
- My grandson got Alexander Disease.And he is 2 years old. we just found out it last night.Please let me now more on this.Cant anyone let me and my wife now more about this disease. We are not good on a ...
Leukodystropy of unknow etiology
- By Lisa44 · New reply June 30, 2009
- Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 24 replies
- I was wondering how many other people are out there with a child who has a leukodystrophy of unknown etiology. I would love some feedback from those of you who do. My son was diagnosis about 7 years ago ...
Stop our childern from suffering
- By hudels2 · New reply June 30, 2009
- Discussion in Other leukodystrophies · 6 replies
- MY name is Richard Hudelson, I would like to talk about Leukodystrophy. Me and my wife have a grandson that is 19 month old that is very sick.and he got Leukodystrophy, he just had a MRI done.and we dont ...
N-acetyl-L-Cysteine for ALD
- By ConnorsDad · New reply June 30, 2009
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 1 reply
- Does anyone have any experience with their son taking NAC (N-acetyl-L-Cysteine)? I know that the BMT patients in Minnesota are on this drug to increase the success rate of their transplant. Has anyone ...
Undiagnosed Leukodystrophy Website
- By DarrenB · New reply June 29, 2009
- Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 20 replies
- Hi my name is Darren, We live in the Chicago area and have a 4yr old daughter Sarah. She was given the title of undiagnosed Leukodystrophy in November 2005. For those that have been to the ULF conferences ...
ALD Mom's who are carriers and Son's who have ALD
- By BMA · New reply June 29, 2009
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 14 replies
- I am almost 50 years old. I have a son who discovered he had ALD June 2004, his 4th year of college. We discovered he had Addison's disease when he was 13 years old but was never tested for ALD. It seems ...
My 3yr. old son was diagnosed on Nov. 20,2008!
- By Missymm4 · New reply June 28, 2009
- Discussion in Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM) · 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 ...
Lovastatin and AMN
- By KateNDalton · New reply June 28, 2009
- Discussion in Adrenomyeloneuropathy (AMN) · 17 replies
- My dad has AMN and has been in a wheelchair for a few years now. He steadily progressed to having to use the wheelchair. He started showing signs in his 20's and is now 64. He still has his stubborness ...
Just Diagnosed
- By teacher · New reply June 28, 2009
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 4 replies
- Our 14 year old son was just diagnosed with x-linked ALD. For the past 2 years, we have been searching for an answer to explain the change in his behavior and cognitive skills. We have been through ADD ...
ADULT ONSET ALEXANDERS DISEASE
- By carolerichard · New reply June 27, 2009
- Discussion in Alexander disease (AxD) - Adults · 6 replies
- PLEASE... ANYONE WITH ADULT ONSET ALEXANDERS DISEASE PLEASE CONTACT ME... I NEED TO HELP MY 15 YEAR OLD SON THANKYOU CAROLE ...
Myelin Repair
- By shawtom2 · New reply June 27, 2009
- Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 7 replies
- I am curious to know if any parents of boys with x-ald have any information about Myelin Repair. My son had a successful cord blood transplant in November of this year(his 2nd cbt in 4 mos.). We are now ...
Lecithin
- By Dexter · New reply June 25, 2009
- Discussion in Alexander disease (AxD) - Parents · 9 replies
- I've read that lecithin is a key ingredient with myelin formation. I recently bought "liquid" lecithin derived from soy-beans and have been giving approximately 1tsp to our son who has Alexander's Disease ...
Anyone in Charlotte, NC with MLC?
- By TaSad · Posted June 25, 2009
- Discussion in Megalencephalic leukodystrophy with subcortical cysts (MLC) · 0 replies
- Trying to connect with others in Charlotte, NC that might have this condition? My 9 month old daughter's MRI shows that she has MLC ...
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- 18q syndrome
- X-linked adrenoleukodystrophy (X-ALD) - Parents
- X-linked adrenoleukodystrophy (X-ALD) - Female carriers
- Adrenomyeloneuropathy (AMN)
- Alexander disease (AxD) - Parents
- Alexander disease (AxD) - Adults
- Canavan disease
- CADASIL
- Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM)
- Cerebrotendinous xanthomatosis (CTX)
- Krabbe disease (globoid cell leukodystrophy)
- Megalencephalic leukodystrophy with subcortical cysts (MLC)
- Metachromatic leukodystrophy (MLD) - Parents
- Metachromatic leukodystrophy (MLD) - Adults
- Pelizaeus-Merzbacher disease (PMD) (X-linked spastic paraplegia)
- Undiagnosed - White matter disorders of unknown origin (UND)
- Zellweger spectrum
- Other leukodystrophies
- Newly diagnosed
- Treatment and therapy
- Living with a leukodystrophy
- Caregivers
- Family and friends
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The United Leukodystrophy Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. The United Leukodystrophy Foundation Support Community is sponsored by the United Leukodystrophy Foundation in partnership with Inspire.