X-linked adrenoleukodystrophy (X-ALD)
- By KateNDalton · New reply November 4, 2008
- 9 replies
- My 4 year old son was just diagnosed in January of this year. It feels like it was ages ago since we were in Maryland at Johns Hopkins and receive the LO and then to Riley Hospital in Indianapolis for ...
- By wenALD · New reply November 23, 2008
- 21 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 ...
- By BH · New reply November 21, 2008
- 4 replies
- Can anyone tell me where to purchase GTO oil? I had been getting it from Parrillo Performance in Ohio, but when I called last week (11/12/2008) they said they no longer carry the stuff ...
Alexander disease (AxD)
- By Sarina · New reply August 17, 2008
- 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 ...
- By wordnerd58 · New reply July 25, 2008
- 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 ...
- By Missymm4 · Posted November 26, 2008
- 0 replies
- I am desperatly searching for any one at all, anywhere who has or had a child with VWM/CACH! I just recently subscribed to this website and am very impressed with how much people know on here about Leukodystrophy ...
Metachromatic leukodystrophy (MLD)
- By 4Reese · New reply August 27, 2008
- 7 replies
- My Daughter Reese (4) has MLD ...
- By crblock · New reply November 10, 2008
- 1 reply
- I am a 65-year-old woman, living in Chicago, who has recently been diagnosed with leukoencephalopathy, of unknown origin. In January, 2008, I had the symptoms of a stroke, but stroke was ruled out. MS ...
Zellweger syndrome, neonatal adrenoleukodystrophy (NALD) and infantile refsum disease.
- By Samsmom · Posted November 24, 2008
- 0 replies
- I met some of you at the ULF Conference, and wanted to give you an update about our son, Sam. Sam was diagnosed with ALL - Acute Lymphoblastic Leukemia November 13th. We are home from the hospital after ...
- By JOSHYSMOM · New reply November 29, 2008
- 7 replies
- I have been told there are only 12 cases in the world of this leukodystrophy so far. does any one know any thing about it? My son was fine until about 2 yaers old and then he started falling alot. His ...
- By jtw1211 · New reply October 22, 2008
- 10 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 ...
- By tallcrowe · New reply August 4, 2008
- 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 ...
- By johnpaulangelchild · New reply November 26, 2008
- 19 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 website....so please ...
- By carolrn · New reply July 26, 2008
- 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 ...
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