Did you know that today is dedicated to bringing awareness to little know diseases and conditions? Didn’t think so. I had no idea either until a random tweet caught my eye. http://www.rarediseaseday.org/ is trying to bring awareness to these orphan diseases and help them get the funding and attention that they so desperately need.
As some of you know for the past 4+ years my Dad has been fighting amyloidosis, a little known disease in which amyloid protiens get deposited on major organs, hardening them and killing off function. He was lucky enough to get on with a highly experimental program at a Vancouver hospital. My Dad has persevered through a bone marrow harvest and transplant. He has suffered through countless months of chemo to keep the amyloid at bay and now he is dealing with nerve issues that have left him without sensation from the waist down. We were told he had at most 5 years, it’s been almost that. He has managed to some how beat the odds and continue his fight. You can visit his blog here.
Please take a moment to visit rarediseaseday.org and find out what your community is doing to bring awareness. Follow @rarediseaseday and tweet your story or support using the hashtag #raredisease. Or post your story and leave me a link in the comments.
To those families struggling and fighting rare diseases my thoughts are with you all. Lets make today resonate in the hearts of many!