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.