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, May 3, 2012

Rare disease

Despite Parkinson’s not having a simple blood test to make a clear diagnosis, the signs and symptoms are very well known and common to most doctors. Rare diseases by definition are not observed on a frequent basis, and a general practitioner (family doctor) cannot be expected to know every rare disease known to mankind. He may never have heard of a particular rare disease, let alone actually come across a patient suffering from one. How would he know where to start, what to look for, or which specialist he should send his puzzling patient to? It is unreasonable and unrealistic to imagine otherwise. When student doctors learn about Gaucher disease in medical school, there is simply one paragraph giving a rough outline of the disease, which is probably the only information deemed necessary regarding this particular rare disease. One day, the doctor may happen to come across a Gaucher patient and more than likely the only one he’ll ever meet and suddenly that one paragraph he learnt in medical school will suddenly take on great importance. 

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