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ITP Awareness Month: A sister’s view

This entry was posted on Tuesday, September 9th, 2014 by Frances Ryan.
Tags: itp, health, guest post, fear, family, faith, expat

This guest post was written by my baby sister, Royann. My desire for ITP Awareness Month is to help educate others and I’m pleased that this post has helped Royann to better understand the condition. If you want to share your own ITP story (or a poem or drawing?), please contact me.

Idiopathic thrombocytopenic purpura. Try saying that three times fast. No? Okay, how about we just call it ITP for short.

But what is ITP?, you ask. It is a disorder that makes people bruise easily and means that when they get your average, every day, run of the mill cold, they could end up in the hospital because their immune system isn't quite up to the task of fighting off the cold on its own due to their low platelet count.

At least, I thought that was the extent of it. Then Frances asked me to write a guest post about ITP from a sibling’s perspective. As the baby of six girls (Frances is third in line to the throne) I love my sisters and I love spending time with them. However, Frances lives in Scotland so the chance to see her doesn’t pop up as often as I would like it to. And not seeing her means not knowing how she’s doing on a daily basis.

I’ve known for years that Frances had ITP. I remember visiting her in the hospital when I was younger because of it, but I never knew the extent of the condition. I always just thought she had to take things a little easier than most people so that she doesn’t bruise—because who wants to look like they’ve been beat up all the time—and that she should avoid being around sick people because her immune system is compromised.

Yes, I worried. But it was just an off-hand worry about my sister, hoping that she’s okay. That worry always goes up a little when she talks about her platelet counts being lower than usual—which is already drastically low! I hope and pray that she is taking care of herself, and I am grateful every day that she has a strong support of friends in Scotland to help care for her. But really, it’s just a bit of easy bruising and colds last longer, right?

Then, I read up on ITP a bit so that this post seemed a little better informed. Boy, did I have it all wrong! And now the worry that I’ve had for Frances for all these years has grown tenfold because of the little bit of research that I’ve done.

You see, ITP is more than just bruising and getting sick easier than most. It is a seriously dangerous disorder. There is no known cause for it. There’s very little rhyme or reason as to who gets it—though women are more likely to get it. The day-to-day effects of it are low platelet counts, easy bruising, prolonged bleeding from cuts, spontaneous nose bleeds, and fatigue—to name a few. Nothing too drastic, unless you’re the one living with it, of course!

But it’s the complications of ITP that worry me the most now.

Like bleeding.

In the brain.

Yes, they say it’s rare. But the disorder itself is rare, so who’s to say that it won’t happen to Frances? She lives half a world away from me, but even if she lived under the same roof, there is nothing that I can do to protect her from such a drastic complication of this horrible disorder.

There are some medications that people with chronic ITP can take. Corticosteroids, for example. In the past, Frances has had to take them for long periods of time, but she tries to live medication-free as much as possible because the medication comes with complications of its own. Osteoporosis and Type 2 Diabetes are a couple of those complications—not to mention the short-term side effects. (There is a reason people call prednisone evil!)

Imagine, living with a disorder that the treatment for can actually cause entirely different problems. Frances’ body is attacking itself. And the medications meant to help her would attack her system as well!

September is Idiopathic Thrombocytopenic Purpura Awareness Month. As we have all learned over the last month with the ALS Ice Bucket Challenge, awareness is the key to raising money to study disorders such as this and to help save lives. I'm not asking you to donate money, but I am asking you to learn about the disorder, and to help spread the awareness further.

You can learn more about ITP from any of these sites. There, you’ll also find ways to donate or to urge your representatives to fund research. (And don’t forget that little things like just donating blood can help, too!)

And once you’ve done that, please make the decision on your own whether or not you will donate money, or even volunteer your time, to help research this disorder.

And please share this post with your friends and family—and challenge them to do the same. And if it makes you feel better, you can throw cold water over yourself, too!

[Photo is Frances and Royann saying goodbye at SeaTac’s departure gate, November 2013. Copyright to my nephew, Brendan.]

Comments

Well-written, and moving to read, Royann.

by Adrian Lea at 7:11pm (GMT) on September 9th, 2014

Thank you, Adrian.  Not just for your nice comment, but for being there to take care of my big sis. :)

by Royann at 8:16pm (GMT) on September 9th, 2014

Wow. I guess I never knew how bad this thing was either. You make it look so easy and like it’s not a big deal. Many people would use it as an excuse to not do anything but there you are traveling the world and running marathon.

It’s no wonder so many people think you are a hero. You rock and I am so proud to call you a friend.

Love,
Your M&Ms; Candy Man

by mm at 2:45pm (GMT) on September 10th, 2014

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