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X-linked adrenoleukodystrophy (X-ALD) - Female carriers
ALD Mom's who are carriers and Son's who have ALD
- By BMA · New reply October 15, 2009
- 16 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 ...
Female carriers of ALD - anyone with elevated ACTH?
- By sarEEE · New reply October 14, 2009
- 3 replies
- Wondering if anyone else was found to have an elevated ACTH level - mine was 81. What does this mean in female carriers? It's been elevated for over a year now. The only dramatic change I've noticed in ...
Eye twitching
- By hereandnow · New reply August 8, 2009
- 4 replies
- Okay...so I'm 90% sure I have leuko...and now my eye is twitching. Do you think one has something to do with the other ...
Drop Foot
- By Js_Mommy · New reply May 24, 2009
- 8 replies
- Can anyone tell me about drop foot, especially how it presents in the beginning ...
Are there male carriers? (Cross-post with parents board.)
- By Js_Mommy · New reply May 5, 2009
- 6 replies
- My almost four-year-old had an MRI at 3 yrs 9 mos which showed "mild delay in myelination." The degree is that it should have been fully myelinated by age two. We then had him tested for the leukodystrophies ...
Lovastatin for ALD Carriers or People with AMN
- By KateNDalton · New reply April 25, 2009
- 15 replies
- I was just put on Lovastatin today to see if it will help decrease my C26 levels. I am asymptomatic but want to do anything I can to help further research. Has anyone been on Lovastatin or part of a Lovastatin ...
Looking for solidarity with carrier symptoms
- By BWinVermont · New reply April 10, 2009
- 4 replies
- I am a 41 yr old woman whose father passed away when he was 32 (I was 11 at the time). I am a ALD carrier and I am blessed with two healthy children. I have been experiencing terrible balance issues ...
Question about symptoms
- By Tonivr · New reply February 19, 2009
- 16 replies
- What are the most common symptoms? My going on 13 year old son was just dx'ed with ALD, we are waiting to see the genetic dr for me to be tested. I also have Ehler-Danlos Syndrome and fibromyalgia. One ...
Symptomatic Carrier
- 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 ...
my family - info needed
- By britt_carrier · New reply November 23, 2008
- 33 replies
- Can someone please set us straight? I asked my sister to have her VLCFA's tested. Her son passed away from ALD in 2000. My dad passed away with AMN in his early 50's, I have been told that I have AMN ...
