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Other genetic Conditions for X-ALD female carriers

della4017
  • By della4017 · New reply yesterday at 2:45 pm
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 6 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 ...

Sleepless Nights

Dantes_Daddy
  • By Dantes_Daddy · Posted yesterday at 10:03 am
  • 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 ...

Study in Spain

dennyshane
  • By dennyshane · New reply April 16, 2014
  • Discussion in Adrenomyeloneuropathy (AMN) · 3 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 ...

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 ...

living with AMN

mikewithers
  • By mikewithers · New reply April 15, 2014
  • Discussion in Adrenomyeloneuropathy (AMN) · 25 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 ...

"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 ...

AMN meet-up in Austin, Texas?

BrianChandler
  • By BrianChandler · Posted April 14, 2014
  • Discussion in Adrenomyeloneuropathy (AMN) · 0 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 ...

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 ...

Leukodystrophy - Night sweats

Therealpud

Adult symptomatic son

wenALD
  • By wenALD · New reply March 22, 2014
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 2 replies
  • Our son is 38yrs old and has been starting to decline health-wise more so in the last few months. He still has hearing and sight thankfully, but speech is extremely limited. Basically he does not talk ...

Diagnosing AMN

CashSpencer1
  • By CashSpencer1 · New reply March 22, 2014
  • Discussion in Adrenomyeloneuropathy (AMN) · 6 replies
  • My uncle has Addison's disease and AMN. I have Addison's disease and believe I too may have AMN. Saw a neurologist who wants to conduct electrical tests. However, I understand a blood test can help diagnose ...

3 Wheel Walkers - Any Recommendations

DavidD
  • By DavidD · New reply March 20, 2014
  • Discussion in Adrenomyeloneuropathy (AMN) · 2 replies
  • I use a cane normally, but find that when I'm in a market, it's easier to use a grocery cart than to use a cane. I'm travelling and will be doing a lot of walking so have to swallow my pride and use a ...

Newly diagnosed son

cherryberry
  • By cherryberry · New reply March 20, 2014
  • Discussion in Cerebrotendinous xanthomatosis (CTX) · 28 replies
  • My 13 year old son was recently diagnosed with CTX. He has a plethora of medical problems including PDD, borderline MR, and seizures. He has been on the CDCA (Xenbilox manufactured by Sigma Tau) since ...

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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.