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, May 16, 2014

Gaucher Patients Unite

Finding another Gaucher patient is always exciting, seeing there are only approximately 10,000 of us worldwide. So imagine my surprise and delight in connecting with a lady who not only was born with Gaucher, but shares much in common with me. Despite living in different countries, the Internet has brought us together, and a bond, a collaboration of sorts has been founded. Emma Rooney has her own Web site if you'd like to take a look at what this incredible lady has been up to. Over the last few years since I began campaigning, I have come across some amazing people. If one could somehow put us all in one room, and harness the determination, strength of character, inspirational unstoppable work that we are all doing in one form or another; the potential is mind blowing.

Parkinson's disease being fairly common, already reaching several million, unfortunately the number of patients diagnosed continue to grow. In various countries around the world, there are support groups and foundations tirelessly doing fantastic work to raise money towards finding a cure and offering good sound advice and support to sufferers and their caregivers. In other words, one could say that the global Parkinson's community is well organised and has got its act together.

Take a rare disease, such as Gaucher, and quite a different picture is portrayed, due to the small number of diagnosed patients scattered around the world, it is hard to simply find one another, let alone get organised. We appear to all be doing what we can to create awareness, and bring attention not just to Gaucher but all rare diseases, which by mere definition, share similar problems. Receiving good care, from a doctor who understands and knows about a rare disease is not easy to find. It is a constant battle making those we come into contact with, understand what Gaucher (or other rare disorder) is, whether you suddenly find yourself admitted to the ER of your local hospital, seeing a new nurse at your health clinic, a social worker and even your local pharmacy. Everyone who you come into contact with for the first time, regarding your health, requires educating, and after many years of doing this, I manage to give a concise summary of the most important facts, relevant to the situation.

I invite you to take a look at my article this week in  The Huffington PostI wish you all a very good weekend, and to a friend who knows why there's a dent in an old filing cabinet; I'm so glad you're feeling a bit better.

1 comment:

  1. Elaine, when we are together, you always come across as one of the most positive people I have met and the following - my late husband's favorite quote, always comes to mind:

    'God grant me the serenity
    to accept the things I cannot change
    the courage to change the things I can
    and the wisdom to know the difference.'

    I am blessed to have you as a good friend.