Center for Children with White Matter Disorders - forum site
December 16, 2017, 02:47:16 PM *
Welcome, Guest. Please login or register.

Login with username, password and session length
 
   Home   Help Search Login Register  
Pages: [1]
  Print  
Author Topic: LBSL  (Read 4118 times)
Tamila
Newbie
*
Posts: 1


View Profile
« on: February 25, 2013, 09:05:39 AM »

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!
Logged
ailleen
Newbie
*
Posts: 1


View Profile
« Reply #1 on: June 20, 2013, 03:30:32 PM »

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
Logged
Pages: [1]
  Print  
 
Jump to:  

Powered by MySQL Powered by PHP Powered by SMF 1.1.20 | SMF © 2013, Simple Machines Valid XHTML 1.0! Valid CSS!