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, March 6, 2015

Wearing Ribbons

Wearing our Blue Denim Genes Ribbons, (which is the symbol of hope for people fighting rare diseases) last week we marked the 28th February bringing attention to Rare Disease Awareness Day. Most I talked to in the days leading up, had not heard of this day so it was a great opportunity to bring attention to the plight of those suffering one of the 7,000 (approx.) known rare diseases.

Sharing one’s story may be difficult at first, but the importance of putting a face, name and personal experience to a rare disease has a huge impact. Not only does it create greater awareness, but helps doctors and others in the medical field understand the human aspect. Having a rare disease can make a person feel quite isolated. By sharing one’s story, a patient can inspire others and possibly reach fellow sufferers and receive support in return.

Through my blog and writing non-stop over the last few years, I have had the pleasure of making contact with other fellow Gaucher patients. This contact has added a marvellous dimension to my life, and the feeling of isolation is now a thing of the past. If you would like to read a wonderful compelling story of a young woman, take a look at Emma’s Story. You may learn something new, or perhaps be able to relate to her unique story.  

There is a great website with a toolkit for those interested in telling their own story of living with a rare disease. Take a moment to read my latest article in The Huffington Post.  

No comments:

Post a Comment