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.