Center for Children with White Matter Disorders - forum site
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 1 
 on: July 03, 2014, 04:45:57 PM 
Started by jaclyn4 - Last post by Ruschj
Have you gotten any more information?  I see many years have passed. I am just starting my journey with my daughter,,,

 2 
 on: August 13, 2013, 10:34:28 AM 
Started by ajenkins26@aol.com - Last post by jinkyjill
Hi there,

Your boys sound very similar to my daughter who was diagnosed by prof van der knapp with hypomyelination with atrophy of the basal ganglia and cerebellum (h-abc). Have you had a diagnosis yet?

 3 
 on: June 20, 2013, 03:30:32 PM 
Started by Tamila - Last post by ailleen
Hi Tamila,

My nephew was also diagnosed with LBSL.

There is a doctor in The Netherlands who actually discovered this disease, her name is Marjo S. van der Knaap.
Her email address is ms.vanderknaap@vumc.nl, send her an email, if there is someone who can help it is her.

If you can send me your email address as well I can update you on what news we receive?

Regards,

Viktoria

 4 
 on: June 06, 2013, 11:37:53 PM 
Started by sberger - Last post by sberger
I have a late teenage patient with non-specific white matter lesions predominantly involving the posterior aspect of the centrum semiovale, and with a near-complete absence of subcutaneous fat.  His mother is diabetic and had a renal transplant prior to pregnancy - she took immunosuppressive medications throughout her pregnancy.  I believe that this is a form of lipodystrophy.  Has anyone seen patients that are similar?

 5 
 on: February 25, 2013, 09:05:39 AM 
Started by Tamila - Last post by Tamila
Hello, I live in Russia, I'm Tamilа. My son is 4 years old and was diagnosed LBSL.We have passed the tests and found the mutation DARS2. Now he has a little ataxia. Doctor prescribed to take Q10. Who of you can to us than anything to help? We are looking for doctors who do LBSL, any information and help!

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