Wearing our Blue Denim Genes Ribbons, (which is the symbol of hope for people fighting rare diseases) last week we marked the 28th February bringing attention to Rare Disease Awareness Day. Most I talked to in the days leading up, had not heard of this day so it was a great opportunity to bring attention to the plight of those suffering one of the 7,000 (approx.) known rare diseases.
Sharing one’s story may be difficult at first, but the importance of putting a face, name and personal experience to a rare disease has a huge impact. Not only does it create greater awareness, but helps doctors and others in the medical field understand the human aspect. Having a rare disease can make a person feel quite isolated. By sharing one’s story, a patient can inspire others and possibly reach fellow sufferers and receive support in return.
Through my blog and writing non-stop over the last few years, I have had the pleasure of making contact with other fellow Gaucher patients. This contact has added a marvellous dimension to my life, and the feeling of isolation is now a thing of the past. If you would like to read a wonderful compelling story of a young woman, take a look at “Emma’s Story”. You may learn something new, or perhaps be able to relate to her unique story.