I was first diagnosed with ITP 16 months ago with a platelet count of 1,000. I was initially put on steroids for a week, but my platelet count remained below 10,000. I was then given IVIG, and my platelets finally bounced back to over 100,000 and I was released from the hospital. Unfortunately, within a week my platelets plummeted back to below 10,000 and I was readmitted. IVIG was used again to bring my platelets back to over 100,000 within five days, but they dropped again, and I was given Promacta® in addition to another round of IVIG.

In high school, my favorite activity was Color Guard. It’s a sport about creating choreography and creating shows with popular music and competing at different schools. I loved Color Guard. It was – and still is – my passion, but I was unable to continue when I was diagnosed with ITP because of the equipment involved that you must toss in the air and catch.

I didn’t think much of the risk. My director had choreography that involved us going on the floor and I would always get hit in the head before I knew I had ITP.

ITP Awareness Month fundraiser by Joseph Ponte

My life changed on May 1, 2004 at the age of 60. Before that, I had a fairly normal life – I had been married to my husband Jim for over 40 years, raised two children, worked full time and exercised four days a week. On the morning of May 1, I woke up with red spots all over my arms and legs. I was recovering from pneumonia and on antibiotics. My first thought was that I was having a reaction to the drug, so I called my internist who got me in his office that afternoon. After discussing what was happening, he did a stat blood test and left me in the examining room to check on the results.

A short time later, I heard him outside the door say, “Oh my God.” But he didn’t come right in, so I thought his remark had nothing to do with me. Not so. He had gone down the hall to check with a hematologist in the building. When he came back, he explained what platelets are, got my husband from the waiting room, and sent me down the hall where the hematologist was waiting to do a bone marrow extraction and start an IV. He called ahead to the hospital and sent me on my way.

You’ve likely heard the metaphor, “the glass is half empty/full.” How full is your glass? If you’re looking on the brighter side of life, it’s always half full. But what about those who have no choice but to have a glass that is consistently half empty? This is how I look at my bleeding disorder, immune thrombocytopenia (ITP).

When did I get ITP? I will never forget it … I was 13 years old and just about to blossom. My future was bright, and my ambitions were even brighter. I told myself I could be anything I wanted to be and so I was striving to do so. I was aiming to be everything that I ever dreamed of.

At the age of 13, I won “Young Authors,” was writing frequent articles as the lad on the school newspaper, a leader of my school’s student body, star track athlete with an outstanding long jump and an amazing five-and-a-half-minute mile, co-captain of the cheerleading squad, and a straight-A student, running for graduation court and valedictorian of my graduating class.

I was the little girl who strove to break glass ceilings. Except my glass was half empty. My platelets were “half full” and they were quickly depleting. Every ounce of energy that I put out only made me sicker. But I didn’t know this yet. I had no idea that the malaise that I felt, the bone pain that was nagging me and bruises that would visit me, was in fact a platelet disorder that was soon to threaten my life.

I was diagnosed with ITP in February 2018 at the age of 15 after a simple checkup for anemia because of heavy periods. At 11:00 PM on the evening after my blood test, we received a call saying that I needed to go to the hospital immediately because I might have ITP. I’d never heard of the condition before, but considering I was called so urgently after-hours, it terrified me.

On January 31, 2018, my count was 12,000, and on February 1, it was 8,000. I was not hospitalized, and I did not receive any treatment.

Before my diagnosis, I was a gymnast and a figure skater, but I had to give up both sports because of the risk of bleeding. I also wasn’t allowed to play sports during gym class, and a lot of my classmates didn’t understand why because I didn’t “look sick.”

Like all five-year-old kids do, Oliver got a bump on his head playing around. His dad and I initially laughed at it because Oliver’s school picture day for kindergarten was just a few days away. But within hours of the bump, a bruise had formed and took over half his face. Throughout the day as things got worse, I checked in with some family and friends who were in the medical field, and everyone agreed that it would get better soon and there didn’t appear to be any damage. The next morning, Oliver’s eye was swollen shut and the bruising was very dramatic. We immediately called our pediatrician’s office, and there was definite concern and confusion over the bruising on Oliver’s face. Our doctor suggested I bring Oliver to the hospital – not the one we would normally go to, but Strong Golisano Children’s Hospital – and get a CBC.

I was diagnosed with ITP in 2019 on my 35th birthday. A five-day stay in the hospital was not at all how I planned on spending my birthday – or the rest of my life. I think I was in denial after my diagnosis. I thought it was a fluke, just a one-time thing, and I wasn’t going to have any more problems. But then, nine months after my diagnosis, I relapsed. And so began my journey on the ITP rollercoaster.

Who would have thought my entire life would change on a Tuesday in April of 2021? Navigating a pandemic is hard enough when you’re healthy, let alone when your world gets turned upside down by an ITP diagnosis.

There were signs I completely ignored in the weeks leading up to my diagnosis. My period was unusually heavy, but I shrugged it off. I’d floss my teeth and my gums would still be bleeding the next morning, but I just thought it meant I should floss more often. A chip clip snagged my arm, giving me a large bruise, and I just laughed at my clumsiness.

Then one morning I woke up with what I assumed was heat rash on my chest and arms – I thought it was odd but didn’t give it much thought beyond that. But as the day went on, it continued to spread across my body, and when I noticed the spots inside my mouth, I started to worry that something else was going on. By the evening my body was covered, and my boyfriend thankfully convinced me to go to urgent care, even as I insisted that we should wait another day. Urgent care recognized it as petechiae right away and sent me straight to the emergency room.

About seven years ago I was off from work, so I enjoyed a day out with my friends. I came back home and had just started cleaning my room when I noticed blood on my hands. I started looking at my hands to find where I had cut myself, then noticed my nose was wet and when I wiped my nose, I saw blood. I realized the blood was coming from my nose, so I laid down for a bit. About an hour later I noticed very small, tiny red dots on my feet. I began to worry. A few hours later I tasted blood in my mouth – I knew it was not from my nose but from a tooth that needed to be extracted. It was late at night and the bleeding wasn’t too bad, so the next morning I went to my family doctor. He said he had no clue what was happening to me and sent me to the hospital.