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, February 28, 2013

Rare Disease Day

Show your support by simply watching and sharing the official video of Rare Disease Day to help bring about change. This is the 6th year of what has now become an annual event to raise public awareness, and although the idea of  Rare Disease Day 2013  is to inform and educate the general community, it's aims are also to bring these diseases to the forefront making politicians, researchers and professionals in the health field pay more attention.

Having a rare disease is very isolating for the patient and family. Often there are no support groups, and no cure or even treatment available. I guess the cruel reality is, that it is not cost effective to the pharmaceutical companies to spend millions on new medications for a rare disease that has a relatively small number of sufferers. I know only too well, for I was born with Gaucher disease, a genetic rare disorder that until 21 years ago, there was no treatment available at all. Thanks to a very special Professor, who made Gaucher disease his life's work, the first Gaucher clinic was opened, and a Gaucher Association was created to offer support and help to fellow sufferers and their families. My husband and I were part of this initial committee that helped found what today is a successful group. Our numbers were small to start with, but as word began to spread, other sufferers started to emerge out of the woodwork and today there are hundreds of patients and their families who have gained from the keen dedication of a marvellous Professor and the drive and determination of an amazing Chairlady who created the Association. Together in numbers we are strong and have a voice.

1 comment:

  1. Linda (Giorgilli) RiceFebruary 28, 2013 at 4:38 PM

    Elaine, I cannot express enough how remarkable I believe you are and what a gift others are given when you share your messages. I know you have heard from me that my father had Parkinson's disease, my maternal grandmother suffered from a Parkinson's plus disease (also known as an Multiply System Atrophy), and I had a great uncle, who had Parkinson's disease. When someone has been diagnosed with a rare disease, or has a loved one who has experienced the struggles that are faced with a rare disease, it changes everyone involved in ways no one can imagine. I began a journey into advocacy, so that I, too, can share my voice in the battle to find cures for these diseases and create awareness. I thank you and share my support.