Raising awareness of some telltale warning signs of ITP

When I think back to my diagnosis with immune thrombocytopenia (ITP), one of the things I remember most vividly is the color purple.

Not the nice kind. Not a favorite dress or a colorful toy. Purple spots. Purple bruises. Purple marks that seemed to appear all over my body without any real explanation. And yes, it was scary.

I was just 8 years old when my mum first noticed a strange purple rash running up and down my legs. These tiny red-purple spots, which I now know were petechiae, were one of the first visible signs that something wasn’t quite right. I remember noticing them and just thinking my legs looked “ugly.”

Then came the bruises.

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Like most 8-year-olds, I was constantly running around, playing, and inevitably knocking myself. But these weren’t ordinary childhood bruises. They were big, bright, purple ones that seemed completely disproportionate to whatever tiny bump had caused them. Worse still, they didn’t seem to disappear as you’d expect.

My mum pointed them out when she took me to the doctor, and I remember how quickly things became serious. With the combination of the rash and unexplained bruising, the doctor was concerned about the possibility of leukemia.

It’s a frightening word for any parent to hear, and I can only imagine now, as a mum myself, what must have been going through my mum’s mind.

Other people also noticed the bruising. I was in Brownies at the time, and I remember my Brownie leader asking my mum if everything was OK at home. Looking back, I completely understand why. Seeing a little girl covered from head to toe in enormous bruises would naturally raise concerns.

But the cause wasn’t happening at home. It was happening inside my body.

There’s no single picture of ITP

ITP is an autoimmune condition in which the immune system attacks and destroys platelets, the cell fragments that help form clots to stop bleeding. A low platelet count can cause someone to bruise and bleed much more easily.

For me, the petechiae and bruising were obvious warning signs, but ITP doesn’t look the same for everyone, which is why I wanted to highlight some early signs and symptoms of the condition.

Other telltale signs may include frequent or unexplained nosebleeds, bleeding gums, blood blisters inside the mouth, and bleeding that takes longer than expected to stop. Some people may notice blood in their urine or stools, while those who menstruate may experience unusually heavy periods.

Petechiae can also be easy to dismiss. They can look like a pinprick rash: tiny red, purple, or brown spots beneath the skin caused by bleeding from small blood vessels. Unlike some rashes, they don’t disappear when you press on them.

Other symptoms aren’t necessarily visible, such as fatigue, which can be a significant issue for some people living with ITP. It can be difficult to explain because someone may look perfectly well while feeling overwhelmingly tired. Symptoms can also vary enormously depending on platelet counts and the individual; some people with low platelets experience relatively little bleeding, while others notice much more.

That’s perhaps one of the most important things I’ve learned about ITP: There isn’t one single picture of what it looks like.

My story began with a purple rash and bruises that wouldn’t go away. Someone else’s might begin with recurrent nosebleeds, unexpectedly heavy periods, or blood blisters in their mouth. For others, ITP may even be discovered unexpectedly through a routine blood test. More than 25 years after my own diagnosis, I can still picture those bruises.

At 8 years old, I didn’t understand what my body was trying to tell me. Thankfully, my mum noticed that something wasn’t right and sought medical advice.

And perhaps that’s the message I would share with other families today. Children get bruises. People get nosebleeds. Rashes appear for all sorts of reasons. Most of the time, they won’t mean ITP.

But when something feels unusual, like bruising without an explanation, bruises that are unusually large or numerous, a pinprick rash, or bleeding that seems excessive, it’s worth getting it checked.

Sometimes our bodies give us clues that something isn’t quite right. Mine just happened to be purple.

Note: Bleeding Disorders News is strictly a news and information website about the syndrome. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Bleeding Disorders News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to bleeding disorders.