Documentary Leukodystrophies Living with a Rare Disease HD

233,536 views

ELA Deutschland e.V.

Published on Feb 18, 2017
About :

ELA Germany is fighting against leukodystrophies. Leukodystrophies are hereditary diseases and attack the myelin development in the central nervous system. Myelin is an insulating sheath made of fats and proteins that wraps around the nerve fibers in many layers. In those affected, the myelin layer either does not build up properly or is gradually lost. If the disease breaks out in a child or an adult, it has dramatic consequences. In this video, families talk about their fates and how they deal with adrenoleukodystrophy, adrenomyeloneuropathy, metachromatic leukodystrophy, Pelizaeus-Merzbacher syndrome or Aicardi-Goutieres syndrome. The European Association Against Leukodystrophies (ELA Germany eV) brings these families together, supports the search for therapies and provides information about this rare disease.

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