The world is
becoming a small place, thanks to modern technology, and in particular the internet.
The isolation felt by patients and their families living with rare disease,
will hopefully become a thing of the past. I wrote a short series of poems
about growing up with Gaucher disease, entitled “Let’s Shoot The Breeze AboutGaucher Disease” – corny title, I know, but it’s had the desired effect. Although
possibly too small a collection of poems to legitimately call a book, I never
the less had it uploaded on Amazon for I had other intentions in mind. I did
not expect any sales, but rather had the idea, if anyone was searching to
connect with another Gaucher patient, a quick search on Amazon would reveal my little
book and provide a way of getting in touch.
Imagine my delight
when a fellow Gaucher patient got in touch, all because of my little book. Thrilled
that my idea had worked - don’t you love it when a plan comes together?!!! A
young lady who has her own website called “Gaucher Stories” contacted me. The
site is a platform, almost like a meeting place bringing the international Gaucher
family together where one can share stories and experiences. Living with a rare
disease such as Gaucher, being in contact with others who have similar stories
to tell is of tremendous value and support.
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