I was diagnosed with ITP in 2004, around 10 years old. I was playing peewee football and halfway through the season I started developing HUGE softball-size bruises during my games. Once my parents figured out this wasn’t normal, they took me to the emergency room and I spent about a year in and out of Valley Children’s Hospital in Fresno, California, doing multiple tests – including a bone marrow test – to figure out what condition I had. Once it was narrowed down to ITP, I went to Valley Children’s weekly to monitor my platelet count. I never received any treatment and about nine months later my count had stabilized, and I was able to get back to my normal life. I thought I had beat ITP and was past it. I was able to get back to sports, playing outside, and simply just being a kid. That was supposed to be the end of it – until it wasn’t.

My dancing friends didn’t understand why I couldn’t go ‘full out’ [at training] since I didn’t ‘look’ sick.”

I was diagnosed with ITP in 2018, when I was 17 years old and in the middle of Year 12 (I’m from Perth, Australia). Suddenly I faced a constant stream of ineffective treatments, including steroids where I couldn’t concentrate at school and IVIG doses that gave me meningitis. I had to skip school for twice-weekly blood tests and family members tried to help by testing me on schoolwork during 6-hour infusions. I was a dancer who trained nearly every day, but this had to be cut back as I would come home with bruises from rolling on the floor or from my pointe shoes. My dancing friends didn’t understand why I couldn’t go “full out” since I didn’t “look” sick.

Finding others to connect with can help you find the strength you need to accept your diagnosis and feel less alone.

I was diagnosed with ITP in 2011. My platelet count at the time was 5,000. I learned this after months of feeling ill followed by weeks of having bleeding issues and many days of asking doctors to do a CBC because I knew something wasn’t right. When I finally did get lab work, the call I received told me to pack a bag, head to the local cancer center, and under no circumstances was I to drive myself. This platelet count meant that I was at high risk of internal bleeding that could be hard to stop even with medical intervention.

There is no test to determine the cause, and determining a treatment is often a process of trial and error once more common causes such as cancer have been eliminated. The first line of treatment for me was the corticosteroid prednisone, a drug whose side effects are body- and mind-changing but works for most at suppressing the immune system and thus stopping the body’s ability to destroy platelets. When my platelets began to drop as I tapered off prednisone over a period of four months, it was decided I would have my spleen removed. After my splenectomy I developed a life-threatening blood clot in my portal vein (PVT) that was treated in the hospital for two weeks as it was difficult to monitor keeping my platelets high enough that my blood would clot, yet being treated with IV blood thinners and monitored closely to attempt to dissolve the portal vein clot.

Working towards normal and taking it one day at a time

When I was a teenager I always bruised after sports. I got married and was a father at 19; then in my mid-twenties I lacked energy at times, so I began getting tests. I felt like a pin cushion with monthly visits and blood tests – my platelets were hovering around 20,000 or dipping as low as 12,000. I was offered steroids but refused, and over the next thirty years or so, I slowly reduced visits to yearly. About ten years ago, my counts were hovering around the same range – between 12,000 and 25,000.

Let’s backtrack to early March 1995, when I went to get a blood test required to apply for a marriage license. When I went to pick up my results, the doctor was concerned because the test came back positive for an STD, but when he had the lab retest it, it came back negative. He told me something was wrong and I should see a specialist.

I saw a specialist at the end of March and was admitted to the hospital that day. The first possible diagnosis was leukemia or HIV. Now, I only had one sexual partner. I bruised easily and I had anemia when I was 12 years old. Those were my only two symptoms. I was tired, yes, but I worked full time at 22 years old and was going to college, too.

“I decided to not give up hope”

I’m Preeti, a twenty-seven year old ophthalmology resident. I was diagnosed with ITP one year ago, and being in the medical field, it was very tough for me to accept it. My platelet count was only 5,000. I was admitted in PGI Rohtak (India) for one week. I was able to recover without any treatment that time. So at this point it was an acute kind of thing, which I was very happy to hear, and everything was good.

But just three months after that episode, I observed small petechiae and bruises on my legs. I rushed to the hospital again and my count was at 4,000. I was shattered. I was not able to think anything positive at that time. My parents took me to Medanta Gurgaon (a prestigious private hospital in NCR) and I was admitted for a few days. They prescribed me a 60 mg dose of steroids, and I stayed on steroid therapy for six months with regular blood tests. Everything was fine except the horrible side effects of the steroids. I gained almost five kilograms with baby fat on my face, acne, and developed new fine tremors. Being in the surgical field, of course the tremors were the biggest challenge for me. I didn’t lose hope, and tried regular exercises and dietary modifications.

“I listen to my body to rest when I can”

“June 28, 2019 started out as any other normal day with waking up, a morning devotional, and reading my newest book before heading off to work. I was feeling very exhausted, but I wasn’t going to complain, as I work as an inpatient physical therapist in an acute rehabilitation hospital and my case load consists of patients recovering from strokes, brain injuries, and amputations. Once at work, I received a text from my husband to call my primary doctor, as the doctor was trying to get a hold of me. I called the office and that is when my life changed. My primary doctor informed me I needed to get to the Emergency Department immediately, as my platelets were at the critical level of 10,000. God is so good, and I was spared from having any neurological deficits, and my doctor was able to save my life. 

My name is April Brimmer. I am 34 years old and I have ITP. I never knew what a platelet was, let alone ITP.

It was July 6, 2012, and I was bleeding extremely heavily due to my menstrual cycle – so much that I blacked out and had to be rushed to the emergency room. The doctors ran multiple tests and after several hours said my platelets were at 3,000. I thought, great, they found out what it was, now I can go home to my one-year-old daughter. But that was not the case. I couldn’t leave the hospital and I panicked. I had never been away from my only child and had nothing prepared for her – that was the worst feeling.

I was admitted to the hospital for two weeks. No amount of steroids or injections worked. I met with a hematologist that suggested IVIG, and it sustained my platelet count for approximately three weeks. For one year straight, I had to be admitted to the hospital once a month for four to seven days at a time for IVIG treatments. I also had my spleen removed.

“Being diagnosed with ITP made me more in tune with my body.”

It was summer 2014 – I had just graduated with my Bachelor’s Degree in Psychology and was visiting my friends and family back home. My father told me, “Nik, you look like a cheetah! You need to go to the doctor.” You see, I was covered in bruises. Not just a random bruise from running into something that you don’t remember running into – they were all over. We all assumed I was anemic, no big deal. I went to the doctor and received a physical and lab work.

One week after that appointment, my doctor called me and said I needed to come in ASAP for more testing. In my head I thought, “What the heck,” but went back in as directed. It was at this appointment that the doctor told my mother and me that my platelets were extremely low, and I needed to see an oncologist. First of all – what are platelets? Second – oncologist?! Like for cancer?! I started crying as my mom held me.

I developed life-threatening, crashing platelet counts so severe that for seven months I needed IVIG every 10 days along with daily Promacta®, steroids, etc.

I was first diagnosed with ITP in April 2017. My body was full of bruises and my platelets were at 7,000. It happened within weeks of returning from a trip abroad where I rode horses and water slides in the jungle. I developed life-threatening, crashing platelet counts so severe that for seven months I needed IVIG every 10 days along with daily Promacta®, steroids, etc. (except for the month I was on heavy-duty antibiotics).