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Carrier Caring for a brother with AMN

MJWilli51
  • By MJWilli51 · New reply 7:54 am
  • Discussion in Adrenomyeloneuropathy (AMN) · 7 replies
  • Hello, I am a carrier of AMN, and I am caring for a younger brother who just turned 55 and has AMN. I have one brother with Addisons's disease and another that had AMN but died in a car accident when ...

My 13 month old diagnosed with leukodystrophy..

IHope4amiracle
  • By IHope4amiracle · New reply yesterday at 8:04 pm
  • Discussion in Newly diagnosed · 1 reply
  • My son was just seen yesterday by the neurologist and the MRI showed that the white matter was changing and he has been regressing for about a month now. He was already developmentally behind for his ...

living with AMN

mikewithers
  • By mikewithers · New reply April 22, 2014
  • Discussion in Adrenomyeloneuropathy (AMN) · 33 replies
  • hi there. my name is Mike, I'm 39. I was diagnosed with AMN 9 years ago. I would love to talk with anyone likeminded or living with ALD or AMN. I know what I've been dealing with and if anyone wants to ...

Other genetic Conditions for X-ALD female carriers

della4017
  • By della4017 · New reply April 22, 2014
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 12 replies
  • Hi, I would like to know if any other female carriers have been diagnosed with any other conditions that relate to the X-Chromosome? I was diagnosed as a X-ALD carrier when I was 16 by DNA testing. For ...

I NEED HELP!

moneesmiles
  • By moneesmiles · New reply April 22, 2014
  • Discussion in Living with a leukodystrophy · 2 replies
  • Hi all thank you for the support during this process of my project. I have changed my strategy of my project to pursue my message of bringing awareness to progressive Neurological disorders. One thing ...

possible leukoencephelopathy

sue111
  • By sue111 · New reply April 22, 2014
  • Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 3 replies
  • hi. i am new to this site. i am looking for some support from others regarding my extreme anxiety about results that i recieved on an mri i had done. my mri shows diffuse white matter changes confluent ...

Lethargy

dennyshane
  • By dennyshane · New reply April 21, 2014
  • Journal · 2 replies
  • The last 3 months I have been nailed with a lethargy I've never known before. Sleeping 15-20 hours every day which in turn is making me weak and it's hard as hell to walk. Progression? Stress? I don't ...

Study in Spain

dennyshane
  • By dennyshane · New reply April 21, 2014
  • Discussion in Adrenomyeloneuropathy (AMN) · 4 replies
  • The human trial study sponsored by Onofre, Aurora Pujol, M.D. with anti oxidant cocktail ended late last year and I can't find out the results. Does anyone know the results of the study ?? Or any other ...

AMN meet-up in Austin, Texas?

BrianChandler
  • By BrianChandler · New reply April 21, 2014
  • Discussion in Adrenomyeloneuropathy (AMN) · 2 replies
  • At my annual appointment with Dr. Florian Eichler (Mass Gen/Harvard), we discussed the lack of AMN experts or neurologists with significant experience treating AMN patients in Texas (or in the South ...

Sleepless Nights

Dantes_Daddy
  • By Dantes_Daddy · Posted April 17, 2014
  • Discussion in Alexander disease (AxD) - Parents · 0 replies
  • Does anyone have a child that wakes up screaming and crying in the middle of the night? My son has been waking up crying and screaming, gripping the blankets like he is in pain. Once I calm him down he ...

Learning to Cope

jddaniel43
  • By jddaniel43 · New reply April 16, 2014
  • Discussion in Newly diagnosed · 2 replies
  • Ok so my now 3 year old son had an MRI of his brain at 13 months old due to microcephalus (head circumference at least 2 deviations below the lowest standard) the concern was that his brain was growing ...

"A wake-up call from a young e-patient: 'I need to be heard'”

John2
  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

chenodeoxcholicacid (CDCA) availability in China

houzheng
  • By houzheng · New reply April 14, 2014
  • Discussion in Cerebrotendinous xanthomatosis (CTX) · 7 replies
  • Hi all, My sister was diagnosed with CTX a few years ago in China and the doctor told us there was no treatment for this genetic disorder. Until very recently I started doing research online about CTX ...

My Girl she's 12 years old

cooneyc3
  • By cooneyc3 · New reply April 13, 2014
  • Discussion in Alexander disease (AxD) - Parents · 9 replies
  • My child had an MRI at age 6. She has Alexander's Disease. She is 12 now. She goes to a special school. She doesn't speak or use the bathroom. How is this disease going to play out??? What do I look for ...

Just wondering

feliciadurham
  • By feliciadurham · New reply April 13, 2014
  • Discussion in Krabbe disease (globoid cell leukodystrophy) · 1 reply
  • A friend of mine has a baby girl with Krabbe. Shes A year old and not expected to live long. I was wondering if anyone had info on wether or not cannabis would help her ...

pain in arms

J50C46D25S23
  • By J50C46D25S23 · New reply April 12, 2014
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 3 replies
  • i don't know if anyone else suffers with this but for the last few days i have had pain in my arms numbness in my fingers and feeling dizzy and hot flushs my physio says it maybe ald or stress as i have ...

Krabbe Disease

kantsdar
  • By kantsdar · New reply April 8, 2014
  • Discussion in Family and friends · 3 replies
  • Hello. I am a high school student. I am doing research on Krabbe Disease. I would love to know more about it. If any of you would like to share your personal experience with it please enter this discussion ...

Bioness Device - Does It Work?

DavidD
  • By DavidD · New reply April 8, 2014
  • Discussion in Adrenomyeloneuropathy (AMN) · 6 replies
  • In a recent discussion about living w/ AMN, one person wrote that he uses a Bioness device. I looked it up and found it's a kind of electronic device fitted in one part just below the knee and the other ...

Spanish speaking patients

AlvaroHSR
  • By AlvaroHSR · New reply April 7, 2014
  • Discussion in Alexander disease (AxD) - Parents · 5 replies
  • I am following a patient with Alexander Disease in the state of Iowa in the USA. Parents speak Spanish and they have found it difficult to get support locally due to the language barrier. They do not ...

20 year old son with Leukodystrophy

KarenSLa
  • By KarenSLa · New reply April 5, 2014
  • Discussion in Living with a leukodystrophy · 6 replies
  • My son has been going to drs since he was approx 14 months old. I have to say I didnt truly realize anything was wrong till he was 14 months and he was not walking. Then we had taken him to his regular ...

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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.