rare disease awareness
For more information about Rare Disease Day make sure to check out the official website as well as charities like Dreams Come True who do such an incredible job supporting those that are rare.
I have not had the chance to complete exams or experience many milestones that teenagers and young adults have. I didn't
How do you get the general public's attention rousing interest in a rare chronic disease? As a patient advocate and ambassador for Gaucher disease, I have written about every aspect imaginable of living with a rare disease.
Early diagnosis and treatment can help those living with Gaucher disease lead a better quality of life. Children should not have to endure what I went through as a child. Those memories stay firmly in my mind, and perhaps for good reason, as this gives me incentive to strive for better understanding of Gaucher disease.
Women are used to bearing it all, talking candidly and honestly on every topic you could possibly think of. In a safe environment, we are willing and able to share our deepest thoughts and bear our soul without fear of judgement or incrimination.
Born with Gaucher disease, I was introduced to the word "rare" at the tender age of five (no pun intended!), as patients with any rare disease will no doubt be able to relate. Once diagnosed with a rare disorder, life is never quite the same again. It's like having a permanent post-it stuck to your forehead with the words R A R E D I S E A S E written in florescent colours.
Emma ran for herself and for "Gaucher disease" but also in my name. I was honoured and very touched when Emma told me she was running on my behalf too, and thank her for symbolically taking me along. I may not be able to run, but I was there in spirit...