Active discussions
- By JOSHYSMOM · New reply November 29, 2008
- In Other leukodystrophies · 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 johnpaulangelchild · New reply November 26, 2008
- In Living with a leukodystrophy · 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 Samsmom · Posted November 24, 2008
- In Zellweger spectrum · 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 wenALD · New reply November 23, 2008
- In X-linked adrenoleukodystrophy (X-ALD) - Female carriers · 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 jolocny · New reply November 22, 2008
- In Living with a leukodystrophy · 10 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 ...
- By BH · New reply November 21, 2008
- In Adrenomyeloneuropathy (AMN) · 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 ...
- By KateNDalton · New reply November 13, 2008
- In Adrenomyeloneuropathy (AMN) · 15 replies
- 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 ...
- By KateNDalton · New reply November 4, 2008
- In X-linked adrenoleukodystrophy (X-ALD) - Parents · 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 dragonfly24 · New reply November 3, 2008
- In Other leukodystrophies · 3 replies
- 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 ...
- By CDNagel · New reply October 30, 2008
- In X-linked adrenoleukodystrophy (X-ALD) - Parents · 5 replies
- My 18 year old son was diagnosed with X-ALD when he was an infant. He participated in the first Lorenzo's Oil study group and was on a non-fat diet until he was 11 years old. He was (and still is) asymptomatic ...
- By blissboys · New reply October 29, 2008
- In X-linked adrenoleukodystrophy (X-ALD) - Parents · 4 replies
- My boys ages 2 and 4, were diagnosed with X-ALD last week. My 2 month old might have it too. I am very concerned what the future holds for them. We are still trying to set up an appt. in Baltimore. I ...
- By jtw1211 · New reply October 22, 2008
- In Newly diagnosed · 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 teacher · New reply October 7, 2008
- 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 ...
