rare disease awareness- my story


RARE diseases. …. MY STORY…for Rare Disease awareness Day
my chiari malformation,
and central hypoventilation syndrome
for ME mean:
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 in 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.

over 10 years i have gone from a fairly able teacher to a disabled knitter. 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. A Helen who maybe awake about 8 hours a day – but is ALIVE!?

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