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.

Thursday, September 26, 2013

Mesothelioma Awareness Day

Suffering from Gaucher disease a rare genetic disorder, I understand only too well what it's like being a minority. There are approximately just 10,000 known Gaucher patients in the world. Having a rare disease may sound special, but believe me, it's not. Finding fellow sufferers, a support network, doctors who understand and have experience with a particular rare disease, treatments and medications that due to a small market are often highly expensive, make things very difficult indeed. When people ask what illness I suffer from, I silently take a big deep breath, before launching into an explanation about a rare disease I know they have never heard of. Over the years I have got the description down to a fine art and can give a concise account of Gaucher, leaving the person informed but not overwhelmed by too much information. At least most have heard about Parkinson's , even if they do not fully understand how debilitating this common disease is.

You probably are wondering what Mesothelioma is, and like Gaucher I am sure many have not heard of this rare disease. I happened to come across a remarkable woman who has survived Mesothelioma, which is a very rare deadly cancer with extremely low survival rates. As I began to read Heather's story, I realised that despite this deadly form of cancer being very different from Gaucher disease, we did in fact share much in common, and are both on a campaign of sorts to bring greater awareness to the general public. A rare disease, by its very virtue, has problems of its own that other common diseases do not bear. Going into a hospital where nurses and doctors have never heard of the disease you suffer from, is a frightening experience, and until you are in capable hands who understand a rare disease, precious time can be wasted and life threatening.

Today is Mesothelioma Awareness Day, and although I normally write about Gaucher and Parkinson's, I thought I would share with you a story of courage, motivation and hope. Please take a look at Heather's site to show your support.

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