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Discussion topics
18q syndrome
X-linked adrenoleukodystrophy (X-ALD)
X-linked adrenoleukodystrophy (X-ALD) - Parents
GENE THERAPY
- By LaurieRB · Posted November 17, 2009
- 0 replies
- Here is a link from Dr Patrick Augbourg. He attended the conference and announced the breakthrough in treating ALD with Gene Therapy. http://www.youtube.com/watch?v=oUqY0Q2l2 vE Any questions regarding ...
All 27 discussions...
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 ...
All 10 discussions...
Adrenomyeloneuropathy (AMN)
Fampridine-SR... possible treatment for AMN?
- By jchumsley · New reply yesterday at 10:35 pm
- 3 replies
- Hello, Has anyone heard about this drug? It is being developed for MS but the developers claim that it might be useful for other demyelinating diseases. It works by improving the conductivity of nerves ...
All 11 discussions...
Alexander disease (AxD)
Alexander disease (AxD) - Parents
has anybody found useful info
- By HARLEYSPARENTS · New reply November 1, 2009
- 18 replies
- hi. our son harley is 8 months old have just spent the last 10 weeks in hospital with him having seizures, was inshubated 3 times due to having prolonged seizures. he then started having vacant episodes ...
All 12 discussions...
Alexander disease (AxD) - Adults
If any One has Alexander disease as adult
- By Sarina · New reply August 9, 2009
- 7 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 ...
All 2 discussions...
Canavan disease
CADASIL
My Husband
- By sue9267 · New reply June 22, 2009
- 8 replies
- My husband is 41 years old. He was diagnosed with CADASIL 1 year ago,since then I have watched him go down hill so fast. He does not get migraines never has, he just has severe confusion, staring episodes ...
All 3 discussions...
Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM)
Digestion problems with Leukodystrophy (CACH)
- By lexismom · New reply November 14, 2009
- 5 replies
- Hi everyone! My six year old daughter has CACH, one of the more rare forms of Leukodystrophy. She has always had problems with digesting her formula. We had to place a Mic-key button when she was two ...
All 8 discussions...
Cerebrotendinous xanthomatosis (CTX)
Krabbe disease (globoid cell leukodystrophy)
Megalencephalic leukodystrophy with subcortical cysts (MLC)
Has anyone tried magnesium supplements?
- By TaSad · Posted October 16, 2009
- 0 replies
- I have been told that magnesium is involved with over 200 metabolic functions and is known to help with sleep and relaxation. Wondered if taking supplements would help with any leukodystrophy symptoms ...
All 4 discussions...
Metachromatic leukodystrophy (MLD)
Metachromatic leukodystrophy (MLD) - Parents
My Daughter Reese (4) has MLD.
- By 4Reese · New reply September 23, 2009
- 9 replies
- My Daughter Reese (4) has MLD ...
All 2 discussions...
Metachromatic leukodystrophy (MLD) - Adults
Pelizaeus-Merzbacher disease (PMD) (X-linked spastic paraplegia)
Undiagnosed - White matter disorders of unknown origin (UND)
Second Opinion Program
- By Halls · New reply November 10, 2009
- 5 replies
- We have recently finished all the testing we can do at this point on my 9 month old daughter, and I am considering doing the second opinion program through ULF. Does anyone have any experience with this ...
All 19 discussions...
Zellweger spectrum
Zellweger syndrome, neonatal adrenoleukodystrophy (NALD) and infantile refsum disease.
Sam Butalla - another struggle
- By Samsmom · New reply May 1, 2009
- 4 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 ...
All discussions...
Other leukodystrophies
Dr Knapp
- By zoe4manaia-rain · New reply November 13, 2009
- 9 replies
- hi there i am curious to know if anyone had has the opportunity to meet or have contact with Dr. Knapp in Holland ...
All 6 discussions...
Newly diagnosed
Hepititis C causing Leukoencephalopathy
- By kristie777 · Posted November 17, 2009
- 0 replies
- I have written you all before about my sister Robin. She was just dignosed with hepititis C and her Neuro said he now think she has Leukoencephalopathy. She has no clue how she could have got Hep C. However ...
All 8 discussions...
Treatment and therapy
Treatment for Adrenoleukodostrophy
- By AA · New reply November 16, 2009
- 27 replies
- Ny son 21 years old has white matter damage on his MRI and elevated very-long-chain fatty acids in his blood. By reading on Internet this is confirmation for only one disease - Adrenoleukodostrophy. Is ...
All 19 discussions...
Living with a leukodystrophy
need a Doctor
- By paulm68 · New reply September 17, 2009
- 6 replies
- We moved to southern Ohio, Near Huntington West Virginia. Need a Doctor who is familiar with Leukodystrophies ...
All 15 discussions...
Caregivers
anyone in south florida
- By marinemomkerry · Posted June 24, 2009
- 0 replies
- are there any families with this in south florida? i met a woman and her son at our neuro appt in march but hadnt seen her since and due to hippa the doctor cannot give me her name and number my son had ...
All 2 discussions...
Family and friends
I will survive ...
- By samshdls · New reply July 30, 2009
- 11 replies
- ... the first 45 days. I call this "the storm", and for good reasons. The things that have to be done after Paul's funeral, is robbing me of my grieving time. The paperwork, meetings with the attorney ...
All 4 discussions...
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