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Prolactin and Remyelination

shawtom2
  • By shawtom2 · New reply yesterday at 11:21 pm
  • Discussion 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 ...

LBSL кто нам поможет?

AND
  • By AND · New reply yesterday at 3:38 pm
  • Journal · 20 replies
  • Здравствуйте! Друзья! Меня зовут Андрей. Летом 2008 ...

Leukoencephalopathy

AND
  • By AND · New reply yesterday at 3:37 pm
  • Journal · 9 replies
  • Hello! Friends! My name is Andrey. In the summer of 2008 to my son Victor, have diagnosed: Leukoencephalopathy with brain stem and spinal cord involvement and elevated lactate on МР spectroscopy. Spastic ...

Gene Therapy

Quiller

AMN

AA
  • By AA · New reply November 4, 2009
  • Discussion 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

AA
  • By AA · New reply November 3, 2009
  • Discussion 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 ...

Alexander disease

bkabo
  • By bkabo · New reply November 2, 2009
  • Journal · 78 replies
  • Could anyone give information on Alexander disease? If you know anybody with this disease or know someone who suffered from this disease I would like to get in contact. I have a 17 yaer old son suffering ...

Glyconutrients for AMN

msh
  • By msh · New reply November 2, 2009
  • Discussion 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

HARLEYSPARENTS
  • By HARLEYSPARENTS · New reply November 1, 2009
  • Discussion 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?

ConnorsDad
  • By ConnorsDad · New reply October 31, 2009
  • Discussion 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...

Nattyneedshelp
  • By Nattyneedshelp · New reply October 31, 2009
  • Discussion 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

MLDdad
  • By MLDdad · Posted October 29, 2009
  • Discussion 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

HARLEYSPARENTS
  • By HARLEYSPARENTS · Posted October 29, 2009
  • Discussion 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 ...

finally things are moving along......

zoe4manaia-rain
  • By zoe4manaia-rain · New reply October 28, 2009
  • Journal · 1 reply
  • after 6 long weeks of NOTHING, yesterday we finally got confirmation that manaia-rains mri pictures and clinical notes are being sent to dr van der knaap in holland for a 2nd opinion. our daughter is ...

Infant Leukodystrophy

Halls
  • By Halls · New reply October 28, 2009
  • Discussion 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

jchumsley
  • By jchumsley · New reply October 28, 2009
  • Discussion 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

Halls
  • By Halls · New reply October 28, 2009
  • Discussion 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

mommyloveswyatt

A little about my husband...

babygirl2369
  • By babygirl2369 · New reply October 26, 2009
  • Journal · 7 replies
  • Here are some updates that I had done on Facebook March 25, 09: we went back to have the neuropsychological testing re-done on brad yesterday at the center for developmental learning at UNC chapel hill ...

reflux

HARLEYSPARENTS
  • By HARLEYSPARENTS · New reply October 26, 2009
  • Discussion 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 ...

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The United Leukodystrophy Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. The United Leukodystrophy Foundation Support Community is sponsored by the United Leukodystrophy Foundation in partnership with Inspire.