The European Gaucher Alliance will be celebrating International Gaucher Day on Saturday 26th July 2014, which would have been Dr. Philippe Gaucher's 160th birthday. This day has been organised to raise awareness of Gaucher disease and they have chosen a very appropriate slogan: "Rare but not alone"!
Living with a
rare disease can often mean isolation, since finding fellow patients is not
that easy. Therefore upon meeting someone with the same rare disease, a
friendship is immediately born as if finding a long lost cousin, and seeing
that Gaucher disease is in fact a genetic disorder, who knows, maybe we are
related in some distant way.
Talking with someone
who has been through the same ordeals and suffers the same symptoms is
comforting, and being in a room with other Gaucher patients, for me is quite
emotional and extremely supportive. I was without any form of support or having
met another Gaucher patient for the first 28 years of my life - that's a long
time!
I am not a doctor, merely a patient sharing my experience, and trying to educate and create greater awareness. I have Gaucher
Type 1 disease, which is the most common form of Gaucher, but you may not be aware there are
actually three types of Gaucher. Type 2 and Type 3, due to small numbers, sadly are often not talked
about, and little is known by the general public or even those patients with
Type 1 Gaucher. Therefore my article in The Huffington Post this week is
dedicated to bring attention to Type 2 and 3 Gaucher disease.
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