My ITP journey began in 1990 at the age of 35. At the time, I was eight months pregnant with my third child and was frightened to learn that after some routine bloodwork with my Ob/Gyn, my doctor had serious concerns regarding my extremely low platelet levels. I had never heard of ITP or low platelets before and was scheduled to have a C-Section in just a few short weeks. Because I was pregnant and my doctor could not guarantee that the local sedative or anesthesia recommended for this procedure would not pass through to my unborn baby, a painful bone marrow biopsy was performed without anesthesia or a sedative to determine the cause of my low platelets and rule out leukemia. I was officially diagnosed with ITP the following week and since that time, have struggled to maintain safe platelet counts.

Hi, my name is Hannah. I was diagnosed in June of 2023 with ITP. I noticed some bad bruising one evening, that hadn’t been there that morning, and that same night I got 2 nosebleeds. I don’t ever get nosebleeds. I thought it was odd, so I made a doctor’s appointment and was sent for blood work.

I was diagnosed with ITP when I was 10, and I am now 16. When I was first diagnosed, I had a real fear of needles, so all the blood tests really scared me.

It’s been 7.5 years since my life changed with two late-night phone calls, on consecutive nights. First, by my internist, who referred me to a hematologist the next day. My internist was pretty sure I had ITP. The next night I was told to get to the hospital “ASAP” where I spent two nights trying to raise my platelets to a safe level. Little did I know that this journey would take such an emotional, mental, physical, and financial toll on me. I thought they’d find a treatment and it would be “resolved.”

“You can hold my hand.” A simple gesture of kindness and compassion, as well as just five little words is what carried me through some of the scariest moments of my life. I remember holding my parents’ hand when I was finally given a diagnosis after years of them questioning the doctors about symptoms. I remember holding my grandmother’s hand when I was told that the boy I had befriended at the hospital might not make it. I remember holding my mom’s hand for what felt like a million needle sticks and again when she let me be a “kid” and dropped me off at Victory Junction Camp (a camp for children with chronic diseases).

When I was 16 years old, I was diagnosed with ITP. I was scared, confused, and had no idea what a platelet even was or why my body wanted to destroy them all and was a freshman in high school. That began my journey through hospitals and appointments and too many missed days of school to count. My outlook with this condition has always been to look positive. Life can be messy no doubt, but I don’t give up easily. Even on the days when my body wanted me to.

I was diagnosed with ITP when I was six years old after a rash appeared on my chest. My mother took me to my pediatrician, where I was told I had a concerningly low platelet count and was referred to a hematologist/oncologist. We were at first scared of the possibility of leukemia due to my low platelets and easy bruising and bleeding, but we soon found out I had ITP, a rare autoimmune disorder where my body mistakenly attacks my own platelets. A lot of my diagnosis is a blur to me because I was so young and never really knew exactly what was going on.

I was diagnosed in late January 2014, following an intense bout of norovirus. I showed my doctor what I thought were broken blood vessels along my collarbone from being so ill. She sent me for blood work for three weeks in a row because my platelets were low and they kept declining to about 10,000. When I got a call with my results, I was told to stay close to a hospital and to wait for a call back about a possible blood transfusion. My doctor was consulting with a hematologist who would provide her with instructions for me. I didn't end up needing the transfusion, but I did go on 60mg of prednisone and was given an appointment date with the hematologist. I went to the hospital for bloodwork (lots of it) and an ultrasound of my abdomen prior to my first appointment with the hematologist.

At the end of September, Global ITP Awareness Week rolls around, and it can be a strange time for someone with ITP; it feels slightly odd to have a spotlight on the thing that is often so private and rarely spoken about. I try to spread as much awareness as possible about ITP, but that comes with a difficult set of emotions to deal with, which is an infinitely more difficult task. I think no matter how much time passes, I will never quite feel the same about ITP on any given day – it’s truly a roller coaster.

I was diagnosed with ITP when I was sixteen years old and have been living with chronic ITP for over three years. ITP has without a doubt changed my life and shifted my perspective on the world.

I was diagnosed with ITP at age 20 – and it was a long process. I was a college athlete, performing as a majorette in my university’s marching band, the East Tennessee State University Marching Bucs. After long practices, I would feel unwell, but I brushed it off as just being exhausted. But the exhaustion seemed to never end.

I visited my primary care doctor complaining of dizziness and numbness and was referred to a hematologist. It was clear that I was anemic; I was deficient in vitamin B12 and iron. However, my bloodwork revealed more problems, including a platelet count of 30,000.