United Leukodystrophy Foundation Support Community

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Brother (29) Diagnosed with MS. Is it AMN?

By jpatrick85 · New reply yesterday at 9:39 pm
Discussion in Adrenomyeloneuropathy (AMN) · 6 replies
Hello all, I am looking for any guidance that you might have. My brother, age 29, was recently diagnosed with MS. His symptoms started with slight loss of feeling in his arm/hands, followed by spasm-like ...

Alexander Disease

By stormy01 · Posted May 19, 2012
Journal · 0 replies
Well it has been 3 years since my husband has gotten sick, things seem to be changing a little with him, his mood are the worst and his behavior, he is not thinking rational at all, which is making it ...

to those with hope,

By natalia42681 · Posted May 18, 2012
Journal · 0 replies
let there not be a minute through the day you feel you have this under control, for at the end of your finger tips sits your joy, make it so. watch the dance of life around you even if its out of rhythym ...

ALD- 9yr old brother

By StephanieeV · New reply May 17, 2012
Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 18 replies
My little brother Nathan had got diagnosed with ald on march 2011. We noticed because his eyes would cross at times, mainly when he would wake up. He also would tell us to repeat things to him over and ...

Other source for Lorenzo's Oil?

By Canadiancrystal · New reply May 15, 2012
Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 17 replies
My son -age 2 has been diagnosed with ALD and we have been turned down for the trial in Baltimore due to lack of funding on their part. Does anyone know of any research going on in Europe or elsewhere ...

New Here

By CShore0523 · Posted May 14, 2012
Discussion in Cerebrotendinous xanthomatosis (CTX) · 0 replies
My husband has CTX and just very recently has been displaying some odd symptoms that is concerning to me but he doesnt seem too concerned about. He has been extremly tired, dizzy spells, and his train ...

oliver leaf lunger

By jrdlngr · New reply May 13, 2012
Journal · 5 replies
my son oliver was at the docs to find out if he is having seizures while there he had the first one he was nearly 2 now at age 3 with a diagnoses of alaxanders disease a brother 9 and sister 6 and numerous ...

Mayo clinic

By Connorsmom929 · New reply May 12, 2012
Discussion in Alexander disease (AxD) - Parents · 1 reply
Does anyone's child see Dr. Deborah Renaud at Mayo Clinic? She has agreed to see my son but wanted to know if anyone had any experience with her ...

Leg pain due to neuropathy in mlc children

By Akallen · New reply May 6, 2012
Discussion in Megalencephalic leukodystrophy with subcortical cysts (MLC) · 3 replies
My son has been diagnosed with mlc and we are finding that he seems to be having some leg pain it is hard to watch and I don't have a way to help him right now the doc said it could be neuropathy just ...

CADASIL Get-Together Sept. 2012!

By JandyM · New reply May 5, 2012
Discussion in CADASIL · 43 replies
Hi all, I just joined here but have been on Facebook with CADASIL Support for a couple years. A small group of us met in Columbus, Ohio last August, and we felt a lot of hope in the presentation Dr. Joseph ...

info on Leukodystrophies

By hollymk · New reply May 5, 2012
Discussion in Help desk · 11 replies
Hello everyone, I'm here at ULF surrounded by a lot of information on the Leukodystrophies. If you need information please feel free to call, email, message, chat or get on our website and look around ...

HDAC inhibitor SAHA normalizes the levels of VLCFAs in human skin fibroblas

By maxensbzh · Posted May 3, 2012
Discussion in Treatment and therapy · 0 replies
HDAC inhibitor SAHA normalizes the levels of VLCFAs in human skin fibroblasts from X-ALD patients and downregulates the expression of proinflammatory cytokines in Abcd1/2-silenced mouse astrocytes. Jaspreet ...

Newborn screening

By jpemarshall · New reply April 27, 2012
Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 4 replies
Hi, Is anyone actively working on trying to get the newborn screening for ALD part of the newborn screening panel in their state? I want to try to advocate for this in IL (my son has PBD, which is also ...

Insurance

By Seetherfan · New reply April 27, 2012
Discussion in Adrenomyeloneuropathy (AMN) · 2 replies
I need help. I recently switched from SSI to disability and medicaid dropped me because of it. I can now not get any medical help from the government and I'm sure there's something. Please help. I have ...

ULF Adminstration

By hollymk · New reply April 19, 2012
Discussion in Help desk · 12 replies
Hello everyone, My name is Holly and I'm here at ULF in Sycamore, Illinois. I am now handling our Inspire community requests. I am looking forward to getting to know everyone ...

4H symptoms

By 2robyn · New reply April 19, 2012
Discussion in 4H syndrome -- Hypomyelination, hypogonadotropic, hypogonadism & hypodontia · 32 replies
Anyone out here/there that has a child with 4H syndrome? My daughter may have it (currently going thru testing) and we would like to know how your child is doing. Example my daughter doesn't walk talk ...

und

By hollymk · Posted April 18, 2012
Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 0 replies
http://clinicaltrials.gov/ct2/show/NCT00 889174 ...

our son aiden

By blair1970 · New reply April 17, 2012
Discussion in Other leukodystrophies · 3 replies
our 2 year old son has some form of this disease and the specialists cant fathom out which form he has,, myself and our sons mother are haviong to give blood samples in order to find out who carries the ...

The Inspire Q&A: Inspire talks with Howard Luks, MD

By John2 · New reply April 15, 2012
Journal · 59 replies
Dear Inspire Community Members, We at Inspire are pleased to bring you the latest in a series of Q&A interviews with people we feel are making contributions to helping patients worldwide. We are posting ...

tumeric for myelin

By shawtom2 · New reply April 15, 2012
Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 6 replies
“turmeric phytosome.” is the recommended form ...

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The United Leukodystrophy Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the United Leukodystrophy Foundation, an Inspire trusted partner.