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.

Wednesday, February 29, 2012

Rare Disease Awareness Day

Many diseases have a special awareness day each year, such as Parkinson’s disease which is on April 11th commemorating Dr. James Parkinson’s birthday. Rare diseases by definition aren't afforded the same exposure, so many are grouped together, including Gaucher’s disease, and Awareness Day for Rare Diseases is rather appropriately assigned to 29th February. Gaucher Disease was discovered by a French Doctor Philippe Charles Ernest Gaucher (1854 –1918). Although Gaucher disease was first documented in 1882, it was only in 1965 that the true biochemical nature of Gaucher was understood. If you would like to join me in bringing awareness of Gaucher and other rare diseases, simply leave a comment on this Blog entry (anonymously if you wish) as a way of showing your support, or you can take a look at Rare Disease Day Site  


  1. Way to go. We'll support you all th etime.

  2. Thinking of you more than ever today - along with all other rare disease sufferers x

  3. For all the people out there who suffer from rare diseases, I am thinking of you. Elaine, the way you cope is amazing. You always have a ready smile and a positive approach. I do wish that all the people who keep complaining about really silly things, would take note of the way you handle your life.
    Keep smiling.

  4. Elaine, I just want to say that "anonymous" above obviously knows you well. When I think of you and what you have to deal with on a day to day basis - well you truly are amazing. We're honoured to have you as a friend, you're a ray of sunshine, and we're looking forward to spending quality time together next week.
    love to you all - Janet and Barry

  5. Elaine, you are a total inspiration to us all. Bless you on this special day
    and on every other day!

    love, Yanky

  6. We live on opposite sides of The Earth, yet our common disease, plus our mutual love for your adopted country bind us.
    Elaine, your positive attitude is infectious. I am learning about Gaucher's Disease; it's bad enough having Parkinson's; I can't imagine being so cheery with 2....yet you always are.
    I hope we meet one day, which is quite possible given my travelling history.
    Know that thee is always someone to whinge to....so far, yet so near with modern technology.
    Hang in there, and keep smiling.

    Melbourne, Australia.

  7. Dear elaine,
    I was vary happy to hear from you. I support all the wonderful thing that you do to raise an awareness to your diseases.
    You are a very special woman and it was a privilege to meet you.

    Well done!
    yours, Yahav (the student)

  8. elaine youy blog as always astounds me ,your attitude,humor,way of positive thinking ,your cup always being half full,is truly awe inspiring,may hashem grant you good health,.and continued joy from your lovely family

  9. Elaine -

    I use you as an example of "good attitude" often. When I look around at those who complain, yet really have nothing to complain about, it makes me so angry. You are truly an inspiration and we can all learn something from you.

    All my love xxx

  10. Dear Elaine,

    I was very excited to here from you while I am on vacation,
    gives some proportions to life..
    If the medicine will have one percent of your creativity & strength I am sure that in a few decades this day will extinct and instead we all remember how it is all just about belief.

    Don't forget that you are a rare person!

    Sincerely yours,
    Dotan Braun

  11. You have my unconditional support and you are an inspiration on dealing
    with ailments which seem to increase with my age.
    Love you.

  12. So important for all sufferers of rare diseases that you have set up a blog. What a help and support to others who know they are not alone with what they have. Your optimism is an inspiration.

  13. Elaine, as ever a role model for those with rare diseases and yet also one for those of us who are lucky enough not to be ill. We are encouraged by you to keep a sense of proportion in our lives and as has already been said: Don't sweat the small stuff....and it is all small stuff.
    My friend, my sister I love you

  14. You continue to inspire us all, Elaine, with your incredibly positive outlook on life. We admire you enormously!
    Much love . . .

  15. Hi Elaine

    Sorry not to have posted reply yesterday! You really are an amazing live wire! Gillian and I wish you well and hope you continue for years.