When Living With ITP, Knowledge Is Power

Tracey:

I'm Tracey. I'm 59 years old.

Tracey:

I have three grown boys.

Tracey:

I enjoy bike riding, cooking, traveling.

Tracey:

I was diagnosed seven and a half years ago with ITP.

Tracey:

My first symptoms, I had strange bruises on the backs of my hands, and then I noticed very large bruises, hard, painful bruises on my legs that didn't go away.

Tracey:

I kept chalking it up to riding my bike, banging into things.

Tracey:

I was in the process of moving.

Tracey:

I'd gone through a very stressful period of time in my life and really ignored the symptoms for about five months.

Tracey:

Then I finally reached out to my internist for a physical.

Tracey:

The bloodwork came back and he said, I need you to clear your schedule.

Tracey:

I think it's ITP.

Tracey:

My hematologist also called me the next night, late at night and said, I need you to get to the hospital right away.

Tracey:

I was in the hospital for a couple of days on steroids.

Tracey:

I would bounce between about 12000 and 20000 platelets for a full year.

Tracey:

And so every single time I would go in and I would get that bad news.

Tracey:

It's mentally draining to sit in a doctor's office once or twice a week to have blood work and not know what direction you're going to go in next.

Tracey:

And to have failed treatment after failed treatment.

Tracey:

The first couple of years I went along with treatments.

Tracey:

Whenever my doctor would tell me what we were going to do, I just went along with it and didn't ask a lot of questions.

Tracey:

And after I had a failed splenectomy is when I really kind of thought, I really need to get more involved in my care and take an active role.

Tracey:

So I needed to control what I could control and kind of let the rest go.

Tracey:

And that was kind of became my motto after that.

Tracey:

So I really became more involved trying to get as much information as I could, talking to my doctors about other...other treatments that I thought were possible.

Tracey:

And now I really feel like my care has improved because I do take such an active role in it.

Tracey:

I tend to be asymptomatic now, rarely will get a bruise and when I do, I kind of try not to freak out.

Tracey:

The main side effects that I have, chronic fatigue is the hardest part for me in my daily life.

Tracey:

When I was on steroids, definitely had a hard time retrieving simple words, especially at work.

Tracey:

I don't notice it as much as I used to, but it's still there on some level.

Tracey:

It's impacted my daily life.

Tracey:

I worry about my treatment failing at some point.

Tracey:

I worry about long-term health effects of the drugs that I'm taking.

Tracey:

I really feel like support in the ITP community is really important.

Tracey:

For me, that was finding other people who had ITP because they understand the journey that you're going through.

Tracey:

You know, we really want to find a cure for this and find something that puts all of us into remission.

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