Rare disease awareness day 2022

at least i have a brain

today I thought i would talk my “ME”.


Northern Ireland Rare Disease Partnership

Syringomyelia Arnold Chiari Association

Chiari malformation.

CSF leaks.

Full Foramen magnum decompression with laminectomy.

Meningitis 2014 & 2018.

Central Hypoventilation syndrome.

Acquired Brain Injury.

Balance problems…

VP Shunt.

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