Living with a leukodystrophy

It is easy to get lost

  • By samshdls · New reply March 4, 2010
  • 1 reply
  • As a caregiver, it is easy to get so involved in what we are doing, that we lose our self. I understand that, and have experienced it. After my husbands death, resulting from his AOL, I felt vacant and ...

I'm new

  • By hereandnow · New reply February 21, 2010
  • 2 replies
  • Hi, I'm 39. I lost my mom to ADLD 2 years ago. My grandma 20 years ago. My younger brother (twins) have it and are 36. They are hard to understand and stumble around and are on three catheders a day ...

Ask Me Kate ...

  • By samshdls · New reply February 9, 2010
  • 7 replies
  • ... ok my name is not Kate, but, "ask Me Lisa " just did not have the same ring to it. So, my discussion has more to do with others asking me questions, then of me asking questions. I have had many questions ...

dont know what to do

  • By kennab · Posted January 29, 2010
  • 0 replies
  • my son a.j is 9yr,he has been throwing fits alot .he will throw things kick, scream, and recently beat his head off of floor.i am not sure how to handle this he doest know any better. anyone have addvice ...

A great book on seizures

  • By 2001mom · Posted December 25, 2009
  • 0 replies
  • I just wanted to share a great book I read. it is called 'Growing Up With Epilepsy", by Lynn Bennett Blackburn. You can order it at for about $20 . Hailey actually had her as a doctor in St ...

need some support

  • By amalia3772 · New reply December 7, 2009
  • 13 replies
  • Im 37 and have a son that has a form(don't know which yet) of Luekodystrophy. I'd like to find some other families that have the same. He is doing good and progressing, but i don'y know what to expect ...

need a Doctor

  • By paulm68 · New reply September 17, 2009
  • 6 replies
  • We moved to southern Ohio, Near Huntington West Virginia. Need a Doctor who is familiar with Leukodystrophies ...

esophagus problems

  • By paulm68 · New reply September 16, 2009
  • 3 replies
  • My son seems to be having problems with food getting stuck in his esophagus, is this part of the leukodystrophy ...

Another way to see it ...

  • By jolocny · New reply September 16, 2009
  • 11 replies
  • I began to get a daily message from Neale Donald Walsh (:Conversations with God" author) and on this particular day I was having trouble getting a hold on my situation with ALD/AMN - it can be so different ...

white matter brain disease leukodystrophy

  • By johnpaulangelchild · New reply September 3, 2009
  • 22 replies
  • I am a mother of a beautiful 10 year old boy who has this form of leukodystrophy, I would like to talk to someone who knows anything about it or anyone who has it....I just joined this please ...

The Five gifts of Illness by Jill Sklar

  • By paulm68 · Posted August 24, 2009
  • 0 replies
  • Has anyone else read this and do you have any other related reads ...

losing ground

  • By paulm68 · New reply August 24, 2009
  • 5 replies
  • this past summer my 18, Jeremiah. with Leuchodystrophy (No specific type) began to lose core muscle control. Getting out of chair is so difficult, un able to remain upright while sitting. Is there a hospital ...

Book Club anyone?

  • By DMBM · New reply August 12, 2009
  • 2 replies
  • Happy Easter all, There wasn't quite the right topic heading for this, but it's not too far off. I was wondering if anyone would like to have a discussion thread about books/plays/movies we have found ...

HDLS - Adult Onset Leukodystrophy

  • By samshdls · New reply July 22, 2009
  • 3 replies
  • I would love to communicate with anyone that has either of these diagnosis. My husband is 51 and has been diagnosed with HDLS, (Hereditary Diffuse Leukoencephalopathy with Axional sephroids) and has had ...

What is a Patient Advocate and how to find one.

  • By samshdls · New reply May 13, 2009
  • 2 replies
  • When the management of a family memeber becomes difficult, or overwhelming, a Patient care Advocate can be a huge help. But knowing what one does and how to find one can e difficult. here are a few tips ...

The puzzel that makes up a rare disease

  • By samshdls · New reply May 3, 2009
  • 9 replies
  • My husband was diagnosed with an extremely rare form of an adult onset Leukodystrophy called HDLS - Hereditary Diffuse Leukoencephalopathy w/ axional Spheroids. Because of it's rare nature many people ...

White matter disease

  • By Ginger09 · New reply April 5, 2009
  • 1 reply
  • I had an MRI done in 2006 which found 2 significant spots on the occipital lobe. Severe headaches from morning till night every day. Spent the better part of 06 in a wheelchair due to Lyrica. I just had ...

Make A Wish Design

  • By makeawishdesign · New reply January 21, 2009
  • 6 replies
  • I am an interior designer working with Make a Wish Foundation to make over a room for a 5 yr. old boy who has Leukodystrophy. Does anyone have any suggestions of things that would be helpful and comforting ...


  • By revdocwlk · New reply June 16, 2008
  • 3 replies
  • Hello! Welcome to this new section of the ULF web site. I am Bill Kintner, ULF Vice-President and a parent of a child with MLD(now deceased). With my wife, Colleen, we have been the vice-presidents of ...

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