rare disease awareness- my story

RARE diseases. …. MY STORY…for Rare Disease awareness Day

chiari malformation.
an umbrella of devastating life changes in a name.

central hypoventilation syndrome

brain surgeries

meningitis TWICE now.

neuropathic autonomic nervous system problems…organ systems …one at a time
for ME the impact of a rare disease meant:

• years of no diagnosis
• strange disconnected symptoms
• very few specialists available
• very little FUNDING
• long waiting lists
• no cures developed so just treatment for symptoms
• LOTS of symptoms…and they layer on one a time.
• new specialists involved.
• more testing.
• more appointments
• more waiting
• like an endurance test – of emotional strength V physical pain
• more medication.
• it is a degenerative condition.
• less energy and more fatigue
• fatigue is incredible….
• NOBODY to compare symptoms with as no 2 patients have same range of complications

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in the past 15 years i have gone from a fairly capable teacher to a disabled person who can knit a bit.

One who has musical ability but little use of her legs.

Whose brain forgets to breathe at night, yet i can SING – and enjoy that.

when both eyes work …but not as a pair…. it is rare.

when most orgam sytems in your body do their own thing… it is lonely.

A Helen who maybe awake but constantly medicating.

who lurches from appointments to waiting lists…..with no real clue….

– but one who is ALIVE!?