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Active discussions
Prolactin and Remyelination
- By shawtom2 · New reply November 6, 2009
- In X-linked adrenoleukodystrophy (X-ALD) - Parents · 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 ...
Gene Therapy
- By Quiller · New reply November 6, 2009
- In X-linked adrenoleukodystrophy (X-ALD) - Parents · 5 replies
- This link was sent to me yesterday http://www.latimes.com/features/health/l a-sci-gene-therapy6-2009nov06,0,1848965. story ...
AMN
- By AA · New reply November 4, 2009
- In Treatment and therapy · 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 ...
Treatment for Adrenoleukodostrophy
- By AA · New reply November 3, 2009
- In Treatment and therapy · 23 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 ...
Glyconutrients for AMN
- By msh · New reply November 2, 2009
- In Treatment and therapy · 1 reply
- Has anyone tried Glyconutrients ? There are so many products out there claiming to be the cure-all that I have become a bit skeptical. We have "friends" trying to palm this product off on us but it is ...
has anybody found useful info
- By HARLEYSPARENTS · New reply November 1, 2009
- In Alexander disease (AxD) - Parents · 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 ...
How much mustard oil to use?
- By ConnorsDad · New reply October 31, 2009
- In X-linked adrenoleukodystrophy (X-ALD) - Parents · 13 replies
- Hello everyone. My 7 year old was diagnosed with ALD in March of this year. We managed to obtain 2 bottles of Lorenzo's Oil and started him on the oil after his initial blood work was done. Unfortunately ...
Please help us...
- By Nattyneedshelp · New reply October 31, 2009
- In Newly diagnosed · 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 ...
NIH survey of Parents of Undiagnosed Children
- By MLDdad · Posted October 29, 2009
- In Undiagnosed - White matter disorders of unknown origin (UND) · 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 ...
got the diagnosis
- By HARLEYSPARENTS · Posted October 29, 2009
- In Alexander disease (AxD) - Parents · 0 replies
- our baby boy harley is 1 in 2 weeks, it all started when he was 5 1/2 months, all the tests and stress and finally he has been confirmed of having a rare mutation gene of alexanders disease. been told ...
Infant Leukodystrophy
- By Halls · New reply October 28, 2009
- In Undiagnosed - White matter disorders of unknown origin (UND) · 6 replies
- Hi everyone, My daughter is 6 months old and two weeks ago an MRI showed that she has the amount of myelin that a 2-3 month old would have. We don't know yet if it is demyelination or hypomyelination ...
spasticity
- By jchumsley · New reply October 28, 2009
- In Adrenomyeloneuropathy (AMN) · 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 ...
Second Opinion Program
- By Halls · New reply October 28, 2009
- In Undiagnosed - White matter disorders of unknown origin (UND) · 1 reply
- 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 ...
QUESTION- VWM-GENETICS
- By mommyloveswyatt · New reply October 27, 2009
- In Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM) · 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 ...
reflux
- By HARLEYSPARENTS · New reply October 26, 2009
- In Alexander disease (AxD) - Parents · 1 reply
- could anybody give there exeriences with reflux. our son pulls a grimising face and brings up clear fluid (acid)is taking ranitidine(zantac) was on 1.3mls twice a day. when he brings the acid up he goes ...
New here, looking for families with VWM disease
- By mommyloveswyatt · New reply October 23, 2009
- In Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM) · 2 replies
- Hi, My name is Felishia, i have a son named Wyatt who is presumed to have VWM disease (doing the test to confirm on monday). Im looking to talk with some families who have already been where we are right ...
Love and Science Conference
- By LaurieRB · New reply October 23, 2009
- In X-linked adrenoleukodystrophy (X-ALD) - Parents · 3 replies
- Is anyone planning on going to Dekalb, IL for the Love and Science conference in November? What will be covered is listed on the ULF website. They are going to talk about spasticity and many other topics ...
Digestion problems with Leukodystrophy (CACH)
- By lexismom · New reply October 22, 2009
- In Childhood ataxia with diffuse CNS hypomyelination (CACH or VWM) · 4 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 ...
Deterioration of cognitive functions -
- By gaby018 · New reply October 22, 2009
- In Alexander disease (AxD) - Parents · 4 replies
- My brother (16yrl old) has Alexander Disease - Juvenile form. Although we know there's no actual treatment our biggest concern at this point is the deterioration of his cognitive functions... it seems ...
ALD / AMN
- By AA · New reply October 20, 2009
- In Treatment and therapy · 9 replies
- Is there anybody who can share good experinece that ALD or AMN was cured and myelin was repaired ...
