Rare Disease Day Feb 28, 2010

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!

*I was not in any way compensated for this post*
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4 opinions on “Rare Disease Day Feb 28, 2010”

  1. Thank you for raising awareness about this. I didn't know there was a rare disease day. The disease that our son Max was diagnosed with when he was three, aplastic anemia, definitely falls into the category. Most people have never heard of it. It can be very frustrating dealing with a disease that most people have never heard of. People tend to discount the seriousness of a disease if they are unfamiliar with it, as if if it was really bad, there certainly would be a lot of press about it. We were often told how lucky we were that he didn't have cancer by people not realizing that it was a life threatening disease with a lower survival rate than many childhood cancers.

    Your father is such an inspiration. I think of him often.

  2. I keep in my constant thoughts, the parents who battle syndromes.diseases.conditions associated with hirschprungs dx and thallasemia, neurofibratosis.

    Three conditions I had the unfortune of having to lightly familiarize myself when concerned for my own children's health. (all is well it seems now that they are older)

    The fear faced by a parent to think their child may have to face a challenge that threatens their life is incomprehensible. I pray that I never have to face this.

  3. Having a rare disease or a child with one is a constant struggle. It is so hard to find information on the disease and if heaven for bid something happens and you need medical attention well be prepared to teach the doctors. My 17 month old son as Hirschspung's disease and very few doctors even know how to spell it never mind them knowing what it is. I get so sick of having to explain to doctors how it affects my son and how it may affect their choice in how to treat him when he is sick.

    To those out there with rare diseases. Stay strong and keep telling your story so that one day hopefully they won't be unknown diseases.

  4. I had no idea. I hope it raised some awareness yesterday for these little-known diseases.

    I hope your dad continues to win the battle.

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