X-linked adrenoleukodystrophy (X-ALD) - Parents
- 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 CDNagel · New reply October 30, 2008
- 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
- 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 · New reply October 14, 2008
- 1 reply
- Just curious to see if any of you have children in the Lorenzo's Oil study that are showing symptoms regardless ...
- By teacher · New reply October 7, 2008
- 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 KateNDalton · New reply September 29, 2008
- 17 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 ...
- By LilLyn1105 · New reply September 7, 2008
- 3 replies
- hi my son is 6 years old was diagnosed january 16 2008 with ald he is now very badly affected by this horrible disease he has lost alot of weight and is ng tube fed can anyone give me some ideas to get ...
