About me

I have been writing poetry and stories since I was a child, and a love of reading was instilled in me from an early age. I am passionate about writing, and hope you enjoy the books I have written. Whilst most of you sleep soundly in your beds, like many Parkinson’s patients, insomnia dictates, so during those hours that sleep eludes me, the house is tranquil and quiet, an atmosphere perfect to immerse myself in writing. My life has been a series of strange events, which have without doubt contributed to my creativity. To publish anything is to bear one’s soul to the world. It is to stand naked and let everyone see who you really are. I have poured my heart and soul out on paper and I hope to share this journey, immersing you in a story, capturing your attention and firing the imagination. Through my writing and public speaking I hope to bring greater awareness to the general public about living with chronic disease.

Friday, July 25, 2014

International Gaucher Day

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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