Right! It’s ITP Awareness Month again so let’s start raising some awareness! I decided to tackle awareness month differently this year because I think we need to start shouting a bit louder. After all, sometimes you have to raise your voice to raise awareness.
What is ITP?
* ITP stands for idiopathic thrombocytopenic purpura which is, essentially, a very low platelet count. A normal count is 150,000-400,000 (generally said as 150-400).
* The lower the number, the higher your risk of bruising and prolonged bleeding/healing – or at the extreme, spontaneous internal bleeding and haemorrhaging (“brain bleeds” and such).
* It is classified as a rare autoimmune disease.
This year, instead of doing one post about my own life with ITP (as I did in 2012 and 2013), I am going to attempt at sharing a few stories over the course of the month. Some by me, some by others. (If I can find the others, that is. Volunteers can pop me a note here.)
And not only am I going to shout more, but I’m going to ask you to shout, too!
OK, we won’t really shout, but I want to challenge you to talk to your family and friends about ITP. I want to challenge you to share your story and to really help spread awareness this year. I want you to share information about ITP on Facebook, on Twitter, on your blog – or even here if you want to write a guest post. (You can write anonymously if you’d like.)
There are no ice buckets involved (unless you want to douse yourself) but you can still share a video if you’d like. Just do something!
The thing is, ITP is a rare disease but not so rare that it doesn’t impact a fair number of people around the world. However, the rareness means that it’s harder to find information online; it’s harder to find others that we can connect with. That’s why I share my experiences here – so that someone, somewhere can find a bit of information from someone who is “like them”.
And if more of us shared our stories or shared information about the disease, others would have an easier time adjusting when they’re first diagnosed. I mean think about it: When you were first diagnosed, did you run to Google to find out how others coped?
Or at least that is my working theory!
Please visit these ITP sites for more information and inspiration for ways to get involved and spread the word:
And, as always, you can check out all of my posts tagged with ITP here. Or check out these specific posts:
- My ITP story: The story of my own ITP diagnosis in 1995.
- The life of tiny platelets: Enjoy some fun cartoons that tell you all about what platelets do!
- Paranoia: The horrible part about ITP is the worry and paranoia about low counts!
- An ode to my platelets: Of course, sometimes that paranoia is warranted …
- A stranger saved my life: How a random blood donor saved my life.
- I’m high: Luckily, I’m generally sporting an OK platelet count.
So come on folks! Let’s get shouting about ITP!
[That’s a picture of my platelets that I drew when I had a count of 10 in January 2011.]