As an advocate I have been sharing my
story, in the hope of bringing greater awareness to Gaucher disease. Story
telling is a wonderful way of enlightening others about a rare disease. It was with
this in mind that I wrote a collection of poems which has been made into a book
and is available on Amazon.
I decided to share my story through
poetry, recalling my early years to adulthood, which some may find resounding
similarities to their own experiences. I hope fellow Gaucher patients and their
families will know they are not alone, and realise just how far medicine and
technology has come in the last 50 years. Circumstances were very different when
I was diagnosed, and thankfully over time great strides have been made.
I am honoured to be a judge on the international
panel for "The Spotlight on Gaucher Film Contest" aimed at patients and
their families. The contest encourages those living with Gaucher disease, to
tell in a unique way the story of how they live with a rare disorder. To find
out more, click on this link and read about an exciting opportunity this summer
to become involved, or read more in my article in The Huffington Post.
Thanks for sharing
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