Wearing two hats,
one for a rare genetic disease and the other hat for a common degenerative
neurological disease, you would think I have my hands full, or at least enough
hats! After all, how many hats can a person wear? But October is Gaucher
Awareness Month, and so today I am wearing my “Gaucher hat” in the hope of
raising public awareness of this rare disorder.
A great initiative
this year was ‘The Spotlight on Gaucher Film Contest’ which is an online video
competition. It provided a platform for Gaucher patients, and their families to
share their unique stories. The winning video entries were announced for
International Gaucher Day - October 1, and can be viewed.
If you were to ask my husband what is the definition of
‘rare’?, like most men, I’m sure the first thing that would spring to mind is
steak! Medium or rare, perish the thought of well done, add a side dish of
French fries and a cold beer to wash it down, I wish this were the only context
I associate with ‘rare’. For me, the word ‘rare’ conjures up a very different
picture, as I was born with a rare genetic disease. Looking up the word ‘rare’
I found it said: of an event, situation, or condition, not occurring very
often, ‘a rare genetic disorder’ synonyms: infrequent, scarce, sparse, few and
far between, like gold dust. Well I don’t know about ‘gold dust’, but the
remainder pretty much says it all.
Take a look at my
article in The Huffington Post and please ‘share it’ to help raise public
awareness.
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