In the US alone, nearly 30 million Americans suffer from one of 7000 rare diseases, that’s 1 out of every 10. Multiply that by each of their family members and friends, that’s a lot of people affected by a rare disease. The names are hard to pronounce, the symptoms difficult to deal with, yet none of that matters. Every day parents watch their children struggle just to live and in many cases they die waiting for an answer. Personally, I know of far too many Angels.
Now imagine this is your child and you are one of those people. Wouldn’t you be begging for help too?
Speaking from personal experience, having (a child with) a rare diagnosis is a difficult road to travel alone. It makes support and more importantly, information vital. Sometimes worse than being ‘undiagnosed’ is having a rare disease diagnosis because there aren’t many resources available to help newly diagnosed families. You are in a haze of doctors and opinions with often no one to turn to.
Our own genetic journey has spanned over twenty-seven years and today we are no closer to an answer than we were the day we started. But we are hopeful that someday researchers will crack the code and we will have our answer. In the meantime, we will continue to treat the symptoms and conditions that our desiger genes carry.
Since I have started blogging I have “met” a handful of families that are also diagnosed with Branchiootorenal Syndrome, that’s five more families than I knew nine months ago. I know we are not alone, but we need your help.
“The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope.” ~ Rare Disease Day 2010 website
There’s a movement, you can be a part of it. All you have to do is wear your favorite jeans on Sunday, February 28, 2010. That’s it. Skinny jeans, Bootcut, Designer, Acid wash, I don’t care…as long as you support hope.
Some causes get a ribbon, we get an entire article of clothing that’s how important we are!!
The Global Genes Project and Children’s Rare Disease Network are teaming up with International, National, Parent organizations and bloggers from across the world to promote World Rare Disease Day, it’s a grassroots awareness effort.
Discovery Health will air the World Premiere of Disease Detectives, based on real-life cases from the NIH Undiagnosed Diseases Program, on February 28, 2010 at 8PM, check your local listings.
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