Discussions

How to Deal with Life on Life's Terms

By KateNDalton · August 14, 2008
In X-linked adrenoleukodystrophy (X-ALD) - Parents · 2 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 ...

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

By BMA · July 25, 2008
In X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 3 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 ...

How Did You Tell an Elderly Family Member About MLD?

By carolrn · July 24, 2008
In Family and friends · 3 replies
Our family has recently received the devastating news that our little "Abby" (my grand niece), 23 months old, has MLD and that this disease is degenerative and fatal. My mother, Abby's great grandmother ...

HDLS

By Summer630 · July 19, 2008
In Other leukodystrophies · 1 reply
I have a family member that has been diagnosed with HDLS. Has anyone heard of this disease? She is 39 years old and has 2 children. Our family went for genetic testing in 2006. The Mayo Clinic is who ...

Love and Science 2008 - Next Month

By applepie1281 · June 19, 2008
In Family and friends · 6 replies
My husband and I are making plans to attend the conference next month, 7/17-7/19. This will be our first trip to Dekalb for the conference, as our son was only recently diagnosed with Alexander's Disease ...

My Daughter Reese (4) has MLD.

By 4Reese · June 16, 2008
In Metachromatic leukodystrophy (MLD) - Parents · 5 replies
My Daughter Reese (4) has MLD ...

Another way to see it ...

By jolocny · June 7, 2008
In Living with a leukodystrophy · 9 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 ...

Recently diagnosed

By Deut31-6 · May 25, 2008
In Newly diagnosed · 5 replies
My husband has recently been diagnosed with Adrenoleukodystrophy. The frustrating thing for me is not really having a prognosis. Will it get worse? We have 3 children: 1 girl age 15, two boys 14 &11 ...

vestibular therapy

By tallcrowe · May 21, 2008
In Treatment and therapy · 7 replies
has anyone tried or even heard of vestibular therapy? with recommendations from both of my son's therapists we are approaching this therapy as a possibility. just wondering if anyone has had any experience ...

Symptomatic Carrier

By wenALD · May 17, 2008
In X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 4 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 ...

Living with AMN

By Pio · May 17, 2008
In Adrenomyeloneuropathy (AMN) · 3 replies
I'm 44 years old and using a cane. my brother died when he was 51 as it turned into ALD. if anyone wants to talk, just jump right in. God bless you all ...

getting by

By wordnerd58 · May 17, 2008
In CADASIL · 22 replies
I am a 50 year old wife and mother. I have been living with this disease for about 5 years. 2 of that was spent ttrying to figure out what was wrong with me. Doctors were starting to think I was nuts ...

any one else undiagnosed?

By tallcrowe · May 15, 2008
In Undiagnosed - White matter disorders of unknown origin (UND) · 9 replies
hi! my 6 year old son is undiagnosed with a possibility of 4h syndrome which is not even an officially named leukodystrophy yet. we have worked with cincinnati children's hospital medical center for about ...

If any One has Alexander disease as adult

By Sarina · May 12, 2008
In Alexander disease (AxD) - Adults · 4 replies
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 ...

provigil

By Mick · May 7, 2008
In Treatment and therapy · 0 replies
Has anyone had experience with provigil? It is a drug that keeps the awake button on without being a stimulant. My wife has adld and is very sensitive to medicine. Unfortunately her condition is such ...

Welcome

By revdocwlk · April 17, 2008
In Living with a leukodystrophy · 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 ...

You

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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.