See some advice from people with experience in Leukodystrophy to people who have just been diagnosed with Leukodystrophy

▷ Which advice would you give to someone who has just been diagnosed with Leukodystrophy?

Stories of Leukodystrophy

LEUKODYSTROPHY STORIES

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INFANT KRABBE DISEASE

http://codziennosckrabika.blogspot.com/

852

2/23/16, 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, non-verb...

844

2/22/16, 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...

762

2/22/16, 4:32 PM by Diane

SARA'S STORY

634

2/22/16, 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 existe tratamentos, mas desco...

622

2/24/16, 11:27 AM by Guilherme Pereira da Silva Marques

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Leukodystrophy forum

LEUKODYSTROPHY FORUM

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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?

Which advice would you give to someone who has just been diagnosed with Leukodystrophy?