Haley’s story

I had been in the process of hockey tryouts and intensive training when I started to notice large, unexplained bruises. When I woke up covered in a reddish purple rash all over my legs and arms, and my mouth full of blood blisters I knew something wasn’t right. I was admitted to hospital where, within a few hours, I was told that they thought I had something called ITP and explained that it was destroying my platelets. I was told that I would never play contact sports again and I was devastated. This was April of 2016, just 1 week before my 16th birthday. This would be the beginning of learning to live life with restrictions and uncertainty, putting aside my current goals and dreams and learning to face my new reality head on.

In hospital, I received 2 rounds of IVIG, the second one with prednisone, but my platelets failed to rise. Next came Anti-D therapy, which only caused me to feel very sick. Over the next 4 months I was prescribed 200mg of prednisone per day for 4 day rounds to stop the extremely heavy nose bleeds I was now having, along with gastrointestinal bleeding. The steroids worked initially, but within 48 hours of treatment my platelet counts would drop back down below 10 and the bleeding would resume. I experienced blood transfusions, and a spinal tap to rule out other diagnosis. It was a painstaking process to find a medical treatment that would stabilize my platelet counts and bleeding. The result was having to deal with side-effects from trialing treatments and experiencing a roller coaster of emotions, hoping a treatment would work.

My medical team suggested I start Romiplostim (Nplate). Unfortunately, at that time, it was not yet approved for use in Children and not covered financially through the province of Ontario in Canada. My parents explored every avenue to receive coverage or financial assistance for the drug, even advocating to local government officials, but to no avail. I will be forever grateful that our community and friends in St. Thomas, Ontario stepped up and held a fundraiser walk/run and raised the money needed to get me started on Nplate. I started Nplate infusions in October 2016 and they worked to raise my platelets to a safe enough level within a few months. My medical team and my parents understood that my mental health was important and, by early December, they allowed me to play hockey again. My hematologist agreed to test my counts the day before every game to make sure I was safe to play but, if I had any signs of being low, which for me were always bruises, petechiae and blood blisters, I didn’t play. I remember him telling me he wished that I was a musician or gamer, anything less risky than contact sports, but he knew I was a competitive athlete and I will always be thankful that he respected me and accommodated my treatment plan to allow me to play the sports I love.

I received over 60 Nplate injections before my platelets stopped responding. I was quickly switched to Revolade (Eltrombopag) which I have continued to take for 9 years with little to no side effects other than the dietary restrictions which are managed by me taking my medication early morning, hours before I eat. I still do not have drug coverage and am fortunate, thanks to the PDSA, to be part of a patient support program. One of the most impactful side effects of ITP for me is the extreme fatigue I experience daily. Crushing fatigue restricts the number of hours I can work and the social events I can participate in. It effects my moods at times, and, if I don’t listen to my body and get enough sleep, I become physically sick.

ITP has changed my path but has not taken the joy out of my journey.

I have gone on to receive an Honours Bachelor of Kinesiology, I have travelled extensively and have volunteered at a dog rescue organization abroad. This year I will return to school to attain a Diploma in Registered Massage Therapy. I work out daily, have a small dog walking business, continue to play women’s hockey, and enjoy time with family and friends.

Bryden’s story

It all started with what felt like a routine change, from our pediatrician to a family doctor. I had regular bloodwork done. We expected normal results, but instead, we got a call that changed everything. My platelets were six, and we were told to go straight to the emergency department. Soon after, I was referred to a haematologist at Victoria Hospital and soon after diagnosed with ITP. There had been no real warning signs, just some random bruising from sports and nosebleeds, which were common in our family. Nothing that seemed out of the ordinary.

One of the hardest parts was being told I had to stop all sports. I was playing basketball and volleyball, track and then later wasn't able to snowboard, so that loss was huge. Over the next year, I was in and out of the hospital for platelet infusions and weekly bloodwork. I missed a lot of school and was really tired. Everything depended on those numbers and whether I could continue to play or had to sit on the bench.

When the infusions didn’t work, I switched to Eltrombopag. I am so thankful for the Compassionate Care Program who helps fund this, as benefits will not cover this drug. The drug regularly keeps my platelets between 20- 50. So, I still have to be very careful.

Honestly, it’s been a bit of a roller coaster. Some weeks are good, some aren’t, and it’s hard not knowing what’s coming next. But I’ve just learned to work with it and take it one week at a time.

I've met some great people who have helped me along my ITP journey and together we are excited to host the first St. Thomas Walk for ITP. It is so important to raise awareness and I'm proud to be a part of it.

Mellow’s Story: A Young ITP Warrior

When Mellody—affectionately known as Mellow—was three and a half years old, her family’s lives changed when she was diagnosed with immune thrombocytopenia (ITP), a disorder that causes dangerously low platelet levels. Before her diagnosis, Mellow was a happy, active little girl who loved gymnastics, riding her scooter and playing at the playground. At first, the bruises appearing on her body seemed like a normal part of being an active child. But they became increasingly frequent and sometimes appeared without explanation. One day, her mother noticed what looked like purple marker on Mellow’s face. It was actually a black eye. Soon, larger bruises began appearing on her arms and legs, sometimes with a pale lump in the centre. Her grandmother, who had spent decades caring for children, recognized that something wasn't right and encouraged the family to seek medical attention.

Around the same time, Mellow began experiencing small nosebleeds. Then one morning, she woke covered in tiny red spots known as petechiae. Bloodwork revealed that Mellow’s platelet count was less than 5,000—critically low. Her family was told to take her immediately to the emergency department.

The first treatments helped, but only temporarily. Mellow began receiving IVIG infusions every three to six weeks, often alongside steroids. The treatments could bring her platelet count up, but they also came with difficult side effects, including severe headaches, migraines and vomiting that sometimes resulted in additional emergency department visits. For the first 16 months, her family lived in a cycle of watching for bruises and petechiae, checking her platelet count and returning for treatment when her levels dropped. When Mellow was diagnosed, her family had been told that most children her age recover within a year. Eventually, they had to come to terms with the possibility that her ITP would be chronic.

Mellow moved on to other treatments, including eltrombopag. She even practiced swallowing Tic Tacs so she could learn to take the medication. While treatment has helped reduce the severity of her symptoms, it has not consistently kept her platelet levels where her medical team would like them to be. More recently, she has needed additional rounds of IVIG and steroids. Living with ITP has affected almost every aspect of Mellow’s childhood. Because she often looks healthy, people may not realize how serious her condition can be. Everyday childhood accidents—including the bumps and falls that are normally part of growing up—can be frightening for her family. Starting school was particularly challenging. Her family had to balance her treatment and safety with their desire to give her as normal a childhood as possible. Despite the uncertainty, Mellow continued to learn, make friends and enjoy school.

And she continues to dream big.

Mellow loves board games, arts and crafts, dance and swimming. She recently got pet fish that she loves feeding, watching and talking to. She dreams of learning to play the piano, becoming a stronger swimmer and learning more languages so she can travel the world. Through years of needles, medications and hospital visits, Mellow has continued to show remarkable resilience.

Her mother describes her as thoughtful, kind, sweet, resilient and unbelievably brave. Mellow may be living with ITP, but she continues to smile, dream and face each day with courage.

She is, in every sense, an ITP warrior.