Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Discussion topics
18q syndrome
X-linked adrenoleukodystrophy (X-ALD)
X-linked adrenoleukodystrophy (X-ALD) - Parents
Prolactin and Remyelination
- By shawtom2 · New reply November 6, 2009
- 2 replies
- Has anyone else heard of the "University of Calgary" discovery, that PROLACTIN helps with Myelin Repair? I've read some articles about this, and I was curious if anyone else heard of this. Here are a ...
All 26 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)
spasticity
- By jchumsley · New reply October 28, 2009
- 13 replies
- Hello, With my AMN (diagnosed in 1986), spasticity is main issue (along with tightness and weakness in my legs). I've been on baclofen since my diagnosis, but I feel that the benefits are less. I've looked ...
All 10 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)
QUESTION- VWM-GENETICS
- By mommyloveswyatt · New reply October 27, 2009
- 1 reply
- I have a question about VWM and the genetic parts of it. We just got our sons blood taken today to confirm that he has VWM disease (vanishing white matter) and i know that when we get the results back ...
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)
NIH survey of Parents of Undiagnosed Children
- By MLDdad · Posted October 29, 2009
- 0 replies
- The National Human Genome Research Institute at the National Institutes of Health (NIH) is sponsoring a study that seeks to learn more about how parents of children with an undiagnosed medical condition ...
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 October 20, 2009
- 8 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
Please help us...
- By Nattyneedshelp · New reply October 31, 2009
- 14 replies
- My 23 year old sister has just been diagnosed with a form of leukodystrophy, they are currently testing the sub type.. We are so confused... There is NO instance of this in our family on BOTH sides of ...
All 7 discussions...
Treatment and therapy
AMN
- By AA · New reply November 4, 2009
- 7 replies
- We are still not sure my son has ALD or AMN. Can somebody share experinece with AMN. What are the test results that confirm AMN? Only VLCFAs or something else? What are the symptoms? Can progression stop ...
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...
Help desk
Have a question about using the site? An idea for making it better? Post here and let us know how we can help.
