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.