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Recommended discussions
ADLD anyone with the same illness
- By dragonfly24 · Posted November 2, 2008
- In Other leukodystrophies · 7 recommendations
- I have this ADLD but I know it is rare but if someone out there has the same thing. I would love to be there email friend ...
Welcome
- By revdocwlk · Posted April 17, 2008
- In Living with a leukodystrophy · 6 recommendations
- 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 ...
Undiagnosed Leukodystrophy Website
- By DarrenB · Posted September 2, 2008
- In Undiagnosed - White matter disorders of unknown origin (UND) · 4 recommendations
- 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 ...
my family - info needed
- By britt_carrier · Posted October 10, 2008
- In X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 3 recommendations
- Can someone please set us straight? I asked my sister to have her VLCFA's tested. Her son passed away from ALD in 2000. My dad passed away with AMN in his early 50's, I have been told that I have AMN ...
My Daughter Reese (4) has MLD.
- By 4Reese · Posted June 16, 2008
- In Metachromatic leukodystrophy (MLD) - Parents · 3 recommendations
- My Daughter Reese (4) has MLD ...
If any One has Alexander disease as adult
- By Sarina · Posted May 12, 2008
- In Alexander disease (AxD) - Adults · 3 recommendations
- If so please contact me at let me know what your symtoms are? Ther testing me for it and try to figure things out. WAS diagnosed with Leukodstrophy. Thanks Sarina ...
Do you have a child diagnosed with CACH?
- By lexismom · Posted March 3, 2009
- In Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM) · 2 recommendations
- My daughter was diagnosed with CACH in 2004, she was 14mths old, She is now 6yrs old. To this day there is still little discussion about this type of Leukodystrophy. I would love to talk with someone ...
Leukodystropy of unknow etiology
- By Lisa44 · Posted January 28, 2009
- In Undiagnosed - White matter disorders of unknown origin (UND) · 2 recommendations
- I was wondering how many other people are out there with a child who has a leukodystrophy of unknown etiology. I would love some feedback from those of you who do. My son was diagnosis about 7 years ago ...
ALD Mom's who are carriers and Son's who have ALD
- By BMA · Posted July 25, 2008
- In X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 2 recommendations
- 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 ...
Symptomatic Carrier
- By wenALD · Posted May 17, 2008
- In X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 2 recommendations
- 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 ...
GENE THERAPY
- By LaurieRB · Posted November 17, 2009
- In X-linked adrenoleukodystrophy (X-ALD) - Parents · 1 recommendation
- Here is a link from Dr Patrick Augbourg. He attended the conference and announced the breakthrough in treating ALD with Gene Therapy. http://www.youtube.com/watch?v=oUqY0Q2l2 vE Any questions regarding ...
Prolactin and Remyelination
- By shawtom2 · Posted October 2, 2009
- In X-linked adrenoleukodystrophy (X-ALD) - Parents · 1 recommendation
- Has anyone else heard of the "University of Calgary" discovery, that PROLACTIN helps with Myelin Repair? I've read some articles about this, and I was curious if anyone else heard of this. Here are a ...
I will survive ...
- By samshdls · Posted July 27, 2009
- In Family and friends · 1 recommendation
- ... the first 45 days. I call this "the storm", and for good reasons. The things that have to be done after Paul's funeral, is robbing me of my grieving time. The paperwork, meetings with the attorney ...
Sams HDLS
- By samshdls · Posted July 5, 2009
- In Other leukodystrophies · 1 recommendation
- On Friday, July 4, 2009, Paul, passed away quietly in his sleep, as a result of complications from Diffuse Leukoenchephalopathy w/ Axonial Spheroids. It is fitting that on July 4th, he became free from ...
What is a Patient Advocate and how to find one.
- By samshdls · Posted May 3, 2009
- In Living with a leukodystrophy · 1 recommendation
- 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 · Posted April 26, 2009
- In Living with a leukodystrophy · 1 recommendation
- 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 ...
HDLS - Adult Onset Leukodystrophy
- By samshdls · Posted April 25, 2009
- In Living with a leukodystrophy · 1 recommendation
- 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 ...
Lovastatin and AMN
- By KateNDalton · Posted October 22, 2008
- In Adrenomyeloneuropathy (AMN) · 1 recommendation
- My dad has AMN and has been in a wheelchair for a few years now. He steadily progressed to having to use the wheelchair. He started showing signs in his 20's and is now 64. He still has his stubborness ...
