World map of Leukodystrophy


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Leukodystrophy stories


INFANT KRABBE DISEASE


http://codziennosckrabika.blogspot.com/

Views: 853 Feb 23, 2016, 8:32 AM by Oliwia

LAUREN


Lauren was diagnosed with Hypomyelnation and Atrophy of the Basal Ganglia and Cerebellum (H-abc) Leukodystrophy at the age of 6 months by the neurology team at The Children's Hospital of Eastern Ontario.     Lauren is blind, non-mobile, ...

Views: 850 Feb 22, 2016, 4:04 PM by Lauren LaVictoire

ALD/AMN


My father had AMN but was misdiagnosed as having MS. He died at the age of 49 due to adrenal failure. My nephew Danny started having problems when he was about 9 years old and that is when the diagnosis of ALD was given and we figured out that was wh...

Views: 769 Feb 22, 2016, 4:32 PM by Diane

SARA'S STORY


Views: 637 Feb 22, 2016, 10:28 PM by Sara

GUILHERME PEREIRA DA SILVA MARQUES'S STORY


O meu filho, Guilherme foi diagnosticado em Janeiro 2014 com Leucodistrofia Metacromática. O primeiro sintoma foi com perda na marcha foi o que nos despertou a atenção de que poderia ter alguma coisa. Em Portugal não exist...

Views: 628 Feb 24, 2016, 11:27 AM by Guilherme Pereira da Silva Marques

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Leukodystrophy forum


MY SON, CHRISTOPHER DIED FROM KRABBE LEUKODYSTROPHY


I wouldn't mind being an ambassador, but I don't have this crappy disease, I am only a carrier. My son had the disease and he died in 1977. Also I don't think I can afford a DNA test... isn't there another way to become an ambassador?

Views: 320 Sep 8, 2016, 12:59 PM by randyskat69@gmail.com

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