New discussions
- 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 BH · Posted November 20, 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 dragonfly24 · Posted November 2, 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 KateNDalton · Posted October 31, 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 CDNagel · Posted October 28, 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 · Posted October 27, 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 KateNDalton · Posted October 22, 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 jtw1211 · Posted October 8, 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 · Posted October 3, 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 ...
- By Amkahler · Posted September 16, 2008
- In Adrenomyeloneuropathy (AMN) · 9 replies
- I am 56 years old and the mother of a 30 year old son who is severely disabled due to AMN. He was diagnosed at age 10 and at that time just had adrenal insufficiency. He was in the original Lorenzo's ...
- By johnpaulangelchild · Posted August 24, 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 ...
