Rare Disease Day 2013
Today is International Rare Disease Day. It’s a day when people around the world band together to make a lot of racket about something that impacts the lives of millions of people – even though, individually, some rare diseases impact only one.
You might wonder why it’s so important to get the entire world talking about diseases that impact such a small number of people, but the reality is that we need to get the world talking about rare diseases as a total number because that’s the only way we’re big enough to make an impact.
It’s like in Horton Hears a Who (a favourite book from my childhood!) when the whole Who community had to shout at the same time so that the rest of Horton’s world could hear them.
As someone with a rare disease (idiopathic thrombocytopenic purpura) I am one of those rare diseasers who collectively has power. Power to lobby, power to inform and educate, power to overcome and survive. I’ve already told my ITP story, so I won’t bore you with that again. Instead, I’ll try to encourage you to take action!
How can you take action? Well, let’s see:
- You can join the National Organization for Rare Disorders (USA) in their advocacy campaigns
- You can work with Rare Disease UK to campaign for more research
- If you or a loved one are rare diseasers, you can share your story with others
- Spread the word about rare diseases on your blog (in general, or pick the disease you want to talk about!)
- Or use your creativity to think of new ways to impact change!
Oh! And to illustrate this post, I am sharing with you my submission to the Rare Artist competition. (Click here to see more swirl drawings.) I will be honest and say that I don’t really like it, but the madness of the last couple of weeks meant that I didn’t have the heart or the energy to re-do it.
If you’re wondering what you’re looking at, this is meant to illustrate life with ITP. The red in the lower-left corner represents blood and platelets, the line of red dots represents petechiae, the blue and purple swirls represent bruising, and the colourful swirls leading away from the bruising represents a bright, bold, and live-able life. I know; what a load of rubbish!
Anyhow, happy International Rare Disease Day to you! Now, go out and spread the word so that we can find cures for some of these diseases!
Hello Frances, I live in southern England and, like you I have ITP and I’m also an artist. I like your work here. I’ve given you the address of my art blog for now. I’m also working on another about my ITP and life history of autoimmune disease, though I still need to iron out the teething problems here before going public. Best wishes. Joan
Thanks for getting in touch, Joan. I’ve had a wee peak at your blog and am in awe of your wonderful talents. It seems that art is really in your veins. For me, my ‘drawn art’ is secondary to my passion of writing. But it is a relaxing past time.
I always envy people who can stick to just one topic on their blogs. I’m too scattered for that! If you’ve had a look around Just Frances, you’ll have noticed that I tackle a wide variety of topics from my medical maladies (ITP and kidney disease) and fun craft projects to my academic endeavours (I’m a social media researcher) and my passion for running.
When you’re ready to launch your ITP blog, please do let me know; I’d love to check it out.
Frances