In 1999, I noticed a lot of “spots” all over my body. I went to the doctor and even they were perplexed. Some bloodwork was done, and I went on to work. It was a shock to get home that night to a message on the voicemail, telling me to get to the hospital immediately. My platelet count was below 5,000. That was my first dance with ITP.

When I was ten years old, I was playing at school and noticed purple spots around my neck. I went for a blood test and my general practitioner phoned and told me to go straight to the hospital because my platelet count was so low. This happened every time I had a blood test. Sometimes my platelet count was less than 5,000!

I was covered in bruises and had a bloody nose nearly every day. If I went from a cold place to a warm place – and vice versa – it would start bleeding. One time I had to be admitted to the hospital because I had a bloody nose that would not stop bleeding. I enjoyed my sports and was playing football and hockey, but wasn’t allowed to play rugby. It was all dangerous, but I was very determined and so I carried on playing sports.

I am a 55-year-old career-oriented woman, and this is my ITP story.

I was first diagnosed with ITP at 17 years old, but I began having consistent nose bleeds and blue-black bruises when I was about 7 years old. I was hospitalized after a blood test showed a platelet count of 5,000 and the doctors put me on prednisone – 3 tablets, 3 times a day – hoping it would raise my counts, but it did not. I could not play sports anymore or participate in any kind of physical activity. I was also told to stop school because any kind of fall could cause cerebral bleeding, but I continued attending school anyway. I live on an island in the Caribbean and had goals and dreams I wanted to pursue, but my life turned upside down between the steroids, weight gain, stretch marks, excessive eating, hospitalization for heavy bleeding, and drug-induced diabetes.

I am a chronic ITP patient. I was diagnosed when I was four years old. All of a sudden, I saw bruises and petechiae all over my body, and then I found out about ITP. I have gone through so much pain and mental and physical stress. Anxiety, fatigue, and depression are part of my daily life, and I suffered from the effects of prednisone. I hit a low when I stopped responding to the prednisone, then the IVIG failed and my last option was a splenectomy. Even after the splenectomy, I relapsed twice, but I believe in God who gave me strength and power.

Now it’s been 25 years of my ITP journey, and I didn’t give up on spending my life as a normal healthy person, but sometimes it is really difficult. My ITP story is long, but now I am a part of the PDSA community, and it really is a blessing for ITP patients.

I was diagnosed with ITP when I was eight years old.

I was on a Disney Cruise with my family when my mom noticed big bruises all over my body. We assumed that it was just from being in the pool with other kids, but as the trip continued, we realized the bruises were getting worse and did not seem to be coming from any sort of injury. As soon as I got home, we went to the doctor, and I got bloodwork done to check my platelet count. My pediatrician called my mom and told her to drive to the hospital as soon as possible. There, I was given an IVIG treatment and diagnosed with ITP. When I got home from the hospital, I went to play with my sisters like normal, but my mom rushed in to tell them to be careful around me.

JJ is five years old and was diagnosed with ITP in June 2019 at just 3 years old. In the short two years since diagnosis, he’s endured over 110 “pokes,” has been on oral and IV steroids, had 14 IVIG infusions (thanks to generous donors), WinRho® infusions, and six emergent hospital says. He is now classified as having chronic ITP.

I began my journey with ITP five years ago. At 52, I had just gone through a difficult divorce and recently moved – an already stressful period of my life. I started noticing large bruises on my legs that I chalked up to riding my bike. After ignoring subtle signs for several months – bleeding gums, blood blisters on my tongue, strange bruises, and rashes – I went to see my internist. He called that night saying he thought I had ITP and referred me to a hematologist the next day. I actually knew a little bit about ITP because one of my friends was diagnosed about 20 years before.

After meeting with the hematologist and more bloodwork (and another late-night call) I ended up in the hospital for a few days. At the time, I just thought they’d give me something to resolve it, and I’d move on!

I was diagnosed with ITP shortly after my 40th birthday. I had been experiencing unexplained bruising and fatigue, and when I went to the hematologist my platelets were at 74,000 – low, but not dangerously low. My hematologist put me on dexamethasone and told me to come back in five days to check again. When he said I could bring my husband to the next appointment, I knew this was more serious than I had initially thought.

By my second visit, my platelets had plummeted to 4,000. The hematologist did an emergency bone marrow biopsy and sent me directly to the emergency room. So began my roller coaster with ITP.

My name is Haley; I am 30 years old and was diagnosed with ITP in 2020. On top of the COVID-19 pandemic, an ITP diagnosis was not an easy thing to navigate!

Prior to my diagnosis, I began having some odd bleeding symptoms, but had been noticing excessive bruising and fatigue for the last few years. I had my daughter in 2016, and it seems that the symptoms started sometime after she was born.

In the summer of 2020, I started having long-lasting bleeding episodes which I attributed to a hormone problem, so I saw my OB/GYN. My husband and I had been trying to conceive for a few months at this point, so it was good to get a check-up anyway.

I was diagnosed with ITP at 16 months old, with a count of 8,000. I am now 33, so going on 31 years of my ITP journey. I’m now considered in recovery with counts near 200,000. My history with this autoimmune disorder is long.

When I was first diagnosed, I was covered in bruises and petechiae and at the suggestion of a family member, my parents took me to the doctor to see what was going on. I had a bone marrow biopsy to rule out leukemia, and after my platelets didn’t rise after six months, the diagnosis was later changed to chronic ITP.

My treatments were steroids and IVIG from age 16 months to 11 years old. I had a treatment every four to five weeks and treatments only raised my counts into the 50s. At 11, treatments changed to Anti-RhoGAM slow IV push. This did not raise my counts for long either, but the nice part was that it was a 60-minute IV push instead of a 16-hour hospital stay IVIG treatment. It was tough being in a wheelchair at school with an IV in my foot for those longer treatments. I also had a para-aide at school to keep me from getting into harmful and unsafe situations such as crowded hallways and busy classroom activities and recess. I wore a helmet and knee pads on the playground and bus to prevent injuries as well. It was a humiliating experience. My aide was also responsible for flushing my IVs and handling excessive random nosebleeds.