Leukodystrophy Awareness Month
Each September sees the return of Leukodystrophy Awareness Month. This is a moment for the rare disease community to come together and raise awareness of what a leukodystrophy is, its symptoms and the impact is has on the patient and the people that surround them.
What is a leukodystrophy?
Leukodystrophies are a group of rare genetic disorders that affect the white matter of the brain. These diseases end up causing damage to the brain’s myelin sheath, which acts as an insulator around the nerve fibres in the brain and spinal cord. This slows down and can even outright block messages between the brain and the rest of the body and can cause problems with:
Movement
Speaking
Vision
Hearing
Mental and Physical development
Most leukodystrophies are neuro-degenerative, meaning that over time the symptoms worsen as the disease progresses.
My experience with AMN
I have a leukodystrophy called Adrenomyeloneuropathy or AMN for short. It primarily affects my mobility. I recently wrote about how it affects me, over on my blog.
