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, ...
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...
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...
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?
3 people with Leukodystrophy have taken the SF36 survey. Mean of Leukodystrophy is 908 points (25 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey