United Leukodystrophy Foundation Support Community

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Nausea

By auntieem · New reply 10:03 am
Discussion in Adrenomyeloneuropathy (AMN) · 2 replies
My husband-- 32 yr. old with AMN --has recently been experiencing bouts of nausea, espescially in the morning or after eating..... it has become an almost daily occurrence. Does anyone else with AMN experience ...

Health Insurance for people with Leukodystrophy's?

By jhall123 · New reply 10:01 am
Discussion in CADASIL · 2 replies
My mom was diagnosed with CADASIL in December of 2009. She is currently on COBRA because when she had a stroke last year she lost her job. Her COBRA expires at the end of October, but everywhere we turn ...

MLD genetic anomoly

By Meggsie · New reply yesterday at 2:26 pm
Discussion in Metachromatic leukodystrophy (MLD) - Adults · 1 reply
I have a rare combination of genes for MLD and want to find somebody with the same. I have two pseudo MLD genes and one MLD gene. The result is a mild form of MLD. Progression is slow and I don't know ...

What do I do?

By cecymal · New reply yesterday at 11:46 am
Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 20 replies
Hello I have a 4 year old son, we have been going through drs for the last 2 years. we know he has the white matter spread all over his brain, MRIs have shown no change, however we are noticing things ...

ALD carrier with extreme fatigue

By carlyn · New reply August 30, 2010
Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 11 replies
Im 44 and been suffering episodes of extreme fatigue that will last for days, my depression gets much worse during these episodes even though im on meds. Have been on antidepressants for about 12 years ...

I need to know some answers

By heathtrac51 · New reply August 30, 2010
Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 2 replies
So sorry to hear about your son,our prayers are with you. my daughter is 16 years old and just got a diagnosis 1 month ago, we have been to soooo many Dr's and no answers this has been 13 years not knowing ...

Alexander Disease Research Study

By Dexter · New reply August 27, 2010
Discussion in Alexander disease (AxD) - Parents · 18 replies
Dr. Albee Messing is currently looking for participants for a GFAP marker study. He needs blood and urine samples. To see details of the study and which clinic locations are approved to collect samples ...

can anyone offer me any advice?

By claire31 · New reply August 27, 2010
Journal · 13 replies
my son is 13 and has physical and learning difficulties always been atttributed to cerebral palsy. However in the last few months he has changed rapidly. He has lost weight, developed severe ocd, has ...

nutrision

By kennab · New reply August 25, 2010
Discussion in Treatment and therapy · 2 replies
i am looking for a nutrisionist for a.j. now,i think it will help with they fits and hyperness,to get him a good diet plan away from sugars and stuff.and he has alot of problems with constipation so getting ...

first entry.

By Dahdeo · New reply August 25, 2010
Journal · 2 replies
spending time in a hospital changes you. spending time worrying about your child dying changes you. scares you. im in the thick of it now with everyone around me wishing things were different. i want ...

Familiy with CADASIL

By Diana101010 · New reply August 25, 2010
Journal · 2 replies
My family was the first in the US to be identified with CADASIL. Per investigators involved in research study in France in 1995, my father had the first CADASIL-related notch3 mutation discovered. This ...

ADEM

By adem2010 · New reply August 25, 2010
Discussion in Treatment and therapy · 1 reply
Hi - I'd like to learn more about ADEM and specifically recovery process ...

ALD and MRIs

By randi72 · New reply August 24, 2010
Journal · 7 replies
My son has X-ALD and is part of the KKI study. I was just wondering if anyone has comments as to how often to do the MRIs? Dr. Raymond says once yearly is fine, but with everything I read about ALD suggests ...

What do you say.

By DennyB · New reply August 23, 2010
Journal · 2 replies
I'm a 53year old with AMN. My walking is now very unstable and strugling with balance. As you can imagine, people that haven't seen me for a while are all asking what is wrong. I feel it is easier to ...

Lisajo

By The_Shadow · Posted August 20, 2010
Journal · 0 replies
Well Lisajo canceled her blood test. She had too much going on. She will reshedule for another day ...

My Sister Lisajo

By The_Shadow · New reply August 19, 2010
Journal · 3 replies
My sister Lisajo has been in alot of pain. She has a hard time walking. United Leukodystrophy recommended that she be tested for Leukodystrophy as her grandson A.J. has an unknown Leukodystrophy. She ...

Adults diagnosed with CTX

By TGiff52 · New reply August 17, 2010
Discussion in Cerebrotendinous xanthomatosis (CTX) · 2 replies
We're getting more requests from adults recently diagnosed with CTX. Please share your experiences possitive and negative. Theresa ...

:) hunter is back at school :)

By huntersmom41702 · New reply August 17, 2010
Journal · 2 replies
my baby boy hunter is back at school .he is in 3rd grade goes to washington elementary in oklahoma. today was his first day and he did AWESOME ..he didnt throw a fit for me to stay and take him home ...

what i didnt know!!!

By kennab · New reply August 12, 2010
Journal · 5 replies
i am getting all my son a.j. medical records 2ghtr to send 2 ulf 4 the second opinion program.and i have been lookn through all of them and i jst got the 1s frm chicago 2day and i says neg.4 alexanders,ald ...

were off to see the dr. the wonderful dr. eichler

By natalia42681 · New reply August 11, 2010
Journal · 3 replies
flights ready to go 6 am monday to boston mass. general to do bio marker and find out new info participating in alexander study for dr, messing. say prayers we find out new info,and travel safe. God bless ...

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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.