Alicia's ITP Journey

It's September, and that means it's Idiopathic Thrombocytopenia Purpura (ITP) Awareness Month. That's the disease I have. What does it do, you may be thinking? Let me tell you. It is a rare bleeding disorder where the body attacks its own platelets, leading to easy bruising and bleeding. It's when the immune system mistakenly attacks the platelets and destroys them. My immune system is attacking my platelets and destroying them every day.

This disease is incurable.

ITP warning signs: Unexplained bruising. If I start to see bruises, I know that my platelets are low. I still have bruises on my arm from February, when I was admitted to the hospital because I tested positive for flu A. I walk around with bruises on my arms and legs every day.

How many people live with ITP?

In adults, it is estimated at 3.3 for every 100,000 people per year.

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Globally, it's estimated that over 200,000 people have ITP. For children, it's estimated that 1 in every 10,000 can develop ITP.

What are normal numbers for platelets?

100,000 and above.

What are low numbers for platelets?

Under 20,000 — I shouldn't be walking.

How does one have surgery with ITP?

To have surgery, I have to be on medication.

The normal number to have surgery is 100,000 and above. How do I know this? While having ITP, I've had three surgeries: one minor and two major.

Am I currently on medication for platelets?

Yes — Promacta. I take this pill once a week. My doctor had me taking the medication one pill every 52 days. After 52 days, my platelets tanked from 300,000 to 89,000 in under a month. If I were to accidentally cut myself using a knife, there's a 100% chance I could bleed out if my platelets are low.

So I can't use a knife, nor can I carry one at work. I used to have my knife hanging from my glove clip; now I carry it in my book bag.

With ITP, it takes up so much time in my daily life. In fact, it consumes me. Having this disease is truly a nightmare. At every doctor's visit, I always have to have a blood draw to know my platelet levels. It's the anxiety of waiting in the office to be called back. It's the anxiety of wondering: Are they low? Are they high? If they're low, what's the next step? If they're above 100,000, I'm good. But it's the unexpected that gets me when they're low.

Once, I had an appointment to have blood drawn with my old hematologist. I got called back to the office and learned what “unexpected” meant. I was sent to the hospital to be admitted. I spent two days there, receiving high doses of steroids and then a platelet infusion. Now, the worry was: Will this work? How long will my platelets stay high? How will my body tolerate this? What if it doesn't?

Then there's the uncertainty after discharge: Will it make me sick? What happens to my body now from this infusion? These are platelets from another person. I have no idea who they came from.

Luckily, I found an amazing hematologist who has done wonders for me. My doctor has my platelets under control and has me on medication that brings them up. If it wasn't for Dr. Minnitti, I don't know what my life would look like today. He has truly saved me.

I urge you to go to your doctor to get a CBC drawn. Take your kids to the doctor to get a CBC drawn.

Having this CBC done is the only way to be diagnosed with ITP.

Before 2020, my life was completely normal.

How was I diagnosed?

I was about to have knee surgery to have my kneecap reattached. Once I got the blood work done, my doctor called me and said I had low platelets and had to cancel my surgery. That surgery was postponed two years until doctors could get my platelets under control. I finally had the surgery in 2019.

Even to this day, I still get severe anxiety going to the hematologist to have labs drawn. I've found a community of other people who have ITP, just like me, who are going through the fear of what's next. It is a journey having ITP, and it has truly changed who I am today.

I'm a facilitator for people in our area who have ITP, and I'm planning meetings for this family of people going through the next steps — to hopefully help them not be so scared. Because I have literally been there and done that.

Please share this post to help me raise awareness about ITP.