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my family - info needed

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Adrenaleukodystrophy and My Nephew.

marshallsaunt
  • By marshallsaunt · New reply October 9, 2008
  • Journal · 5 replies
  • Marshall is my 6 yr old nephew. He was diagnosed with X-linked Adrenaleukodystrophy after an MRI for headaches. We were all devastated at the news and my sister and I started researching the internet ...

Undiagnosed Leukodystrophy Website

DarrenB
  • By DarrenB · New reply October 9, 2008
  • Discussion in Undiagnosed - White matter disorders of unknown origin (UND) · 14 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 ...

Newly Diagnosed 8 year old

jtw1211
  • By jtw1211 · New reply October 8, 2008
  • Discussion in Newly diagnosed · 2 replies
  • My 8 year old son was diagnosed 3 weeks ago with adrenaleukodytrophy, what a horrible disease. He has brain involvement, but does not have Addision's yet. My husband and I have fought with dr's since ...

livin each day

wordnerd58
  • By wordnerd58 · New reply October 7, 2008
  • Journal · 4 replies
  • I try to take it one day at a time these days. As things ge harder for me to keep up with I just try to do what I can that day and let the rest go. For anyone who ever knew before that is the exact opposite ...

Just Diagnosed

teacher
  • By teacher · New reply October 7, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 3 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 ...

Meeting Leukodystrophy

cubsportgal21
  • By cubsportgal21 · New reply October 7, 2008
  • Journal · 11 replies
  • Graduating from high school in 2006. I came to face a disease i knew nothing about. It brought me to my knees, and doctors had no clue to what was going on with me. Until my mom stood her grounds and ...

AMN - My son and me

Amkahler
  • By Amkahler · New reply October 3, 2008
  • Discussion in Adrenomyeloneuropathy (AMN) · 9 replies
  • I am 56 years old and the mother of a 30 year old son who is severely disabled due to AMN. He was diagnosed at age 10 and at that time just had adrenal insufficiency. He was in the original Lorenzo's ...

September 27, 2008

snugglebearsmom
  • By snugglebearsmom · New reply October 2, 2008
  • Journal · 5 replies
  • It's been a little bit since I've posted a journal entry, things have been really emotional around here. On Saturday September 27, 2008 Tyler and his Grandma traveled back to Duke University. We decided ...

Update on Tyler

snugglebearsmom
  • By snugglebearsmom · New reply September 29, 2008
  • Journal · 17 replies
  • Today was a very emotional day, we decided that we are not going to have him go through the transplant. It was the hardest decision I have ever had to make in my life however I feel that it was for the ...

How to Deal with Life on Life's Terms

KateNDalton
  • By KateNDalton · New reply September 29, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 17 replies
  • I am a mother of a beautiful 4 year old boy who was diagnosed in January of this year with ALD. He didn't show any signs but my dad has AMN, my male cousin has AMN, my female cousin is a carrier and her ...

How to Deal with Life on Life's Terms

coco1252
  • By coco1252 · New reply September 26, 2008
  • Journal · 2 replies
  • I also have a son who was diagnosed with ALD and adrenal insufficiency when he was 8. He was on Lorenzo's oil until he was 16. He wanted to go off it. It was a hard decision but he saw everything his ...

alexander disease

2001mom
  • By 2001mom · New reply September 20, 2008
  • Journal · 1 reply
  • My daughter Hailey ,7, was diagnosed a year ago. It took 5 years to get a diagnosis. She appeared to develope normally until 9 months when she stopped eating and started having seizures. She was unable ...

UND

cubsportgal21

ALD Mom's who are carriers and Son's who have ALD

BMA
  • By BMA · New reply September 13, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 10 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 ...

A mother or an impaired child needs no saint!

asnyder
  • By asnyder · New reply September 13, 2008
  • Journal · 7 replies
  • Most women become mothers by accident, by choice, a few by social pressures and a couple by habit. This year, nearly 100,000 women will become a mother of a handicapped child. Did you ever wonder how ...

Lovastatin for ALD Carriers or People with AMN

KateNDalton
  • By KateNDalton · New reply September 12, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 9 replies
  • I was just put on Lovastatin today to see if it will help decrease my C26 levels. I am asymptomatic but want to do anything I can to help further research. Has anyone been on Lovastatin or part of a Lovastatin ...

Symptomatic Carrier

wenALD
  • By wenALD · New reply September 9, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 12 replies
  • This would be nice if we could support one another and maybe give each other information that might help alleviate some problems. I have four grown children. My sons, 33 and 28 were diagnosed in 1986 ...

my son joshua

LilLyn1105
  • By LilLyn1105 · New reply September 7, 2008
  • Discussion in X-linked adrenoleukodystrophy (X-ALD) - Parents · 3 replies
  • hi my son is 6 years old was diagnosed january 16 2008 with ald he is now very badly affected by this horrible disease he has lost alot of weight and is ng tube fed can anyone give me some ideas to get ...

Hypomylination atrophy of the basal ganglia and cerebellum

JOSHYSMOM
  • By JOSHYSMOM · New reply September 5, 2008
  • Journal · 3 replies
  • MY son was recently diagnosed with Hypomylination of the basal ganglia and cerebellum. Does anyone have any info on this rare leukodystrophy ...

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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.