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.

Tuesday, October 1, 2013

Lace up your shoes

If you've been following my blog, you'll know that I was born with Gaucher disease, a genetic disorder unknowingly passed on from my parents; a birthright  I could have well done without. I was further diagnosed with Parkinson's at age 44, so I wear two hats as it were, advocating both diseases.
October is Gaucher Awareness Month so step ahead of Gaucher disease during this month, show your support for the Gaucher community and join by wearing green shoelaces as a symbolic gesture. In America, Genzyme Corp. have come up with this original campaign, and throughout the month of October, anyone wearing green shoe laces (or as a bracelet if preferred) may submit a photograph and upload it to www.stepsaheadof gaucher.com. In turn, Genzyme Corp. will make a donation on your behalf to the National Gaucher Foundation.

 As an overlooked rare disorder, help promote awareness and unity in the fight against Gaucher, most importantly, get people to notice and become educated about this rare disease! Please help me and the 10,000 known Gaucher patients throughout the world, spread the word by sharing this message and passing my website on to your family and friends.
Gaucher disease is caused by a deficiency in a particular enzyme (glucocerebrosidase). The body is more fragile than we imagine and when one small thing is thrown out of whack or is amiss, like a domino effect, the outcome can be highly damaging. Genetics a complicated subject, was once explained to me, as if a recipe for a cake had a error in the list of ingredients. Imagine a recipe with a mistake calling for a cup of salt instead of a cup of sugar! The cake would probably bake equally well, and served on a plate it might even look like any ordinary cake, but take one bite and you would immediately know from the unpalatable taste that something was definitely amiss. One simple wrong ingredient, too much or too little of something, can make a world of difference. From bone pain and severe fatigue to life-threatening complications, it is challenging for patients and caregivers to cope with Gaucher.

Learn more about Gaucher disease disease from Gaucher Care.

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