Itʼs been a long time since my diagnosis in 2006.*

As I reflect on my journey, I know it hasnʼt been easy...the beginning was definitely a whirlwind of emotions and lifestyle adjustments. At the 10 year mark, I hit a low point...I was tired of dealing with my diseases. But, after I got over the “why me?!” moment again, I decided it was time to make changes. After discussions with my doctors, I was able to go off all medications for my ITP and Lupus for a short time. I am currently back on meds for my Lupus, and my platelet count remains low but manageable. This journey has been difficult, stressful, and tiring, but also, interesting, inspiring and amazing. I know that my journey is not over, so the meantime, Iʼll keep my spirits up and clear my mind with travel adventures and foodie quests!

*I had been feeling exhausted for months, and knew it had to be more than just being a mom to my four busy children. I had always been very healthy, so I was shocked to be diagnosed with SLE (lupus) and ITP, not just one, but two, autoimmune diseases. My days became filled with doctors appointments, labs, a bone marrow biopsy, treatments, infusion centers, and research. I've been hospitalized twice, and have had many different treatments...Rituxan, IVIg, Imuran, Cellcept, Dapsone, Prednisone, Myfortic. Despite my low platelet counts, I remain hopeful in finding the right treatment for me."

Discovering PDSA, and attending my first conference in 2010, had such an impact on me. My husband, family, and friends were all so supportive, but here, I finally felt that I wasn't alone dealing with ITP. It was an incredible experience to be surrounded by others who understood, and were personally experiencing similar issues. I am so grateful to the amazing PDSA staff and medical advisors for their wealth of knowledge and involvement in this organization. I have now attended 11 conferences across the country (9 in-person and 2 virtual), and serve as an ambassador for first-time attendees, as well as fundraising and co-facilitating PDSA support group. PDSA continues to support our efforts to raise awareness year after year, and I truly appreciate your continued support too.

I was diagnosed with ITP in February 2016 after finding large bruises on my legs. My parents were concerned that someone was hurting me because of how big these bruises were. The day after getting blood work done, I had two missed calls from my doctor and knew that couldn’t be a good sign. When I called her back, she told me that I had ITP and had go to the hospital because I was risk for a brain bleed and other spontaneous bleeds. A normal platelet count is supposed be about 150,000 to 400,000, but my count was 2,000 when I was admitted to the hospital. I never expected three letters to be so terrifying. This began my journey of trying different treatments to see what worked best with my body. After being on steroids for 6 months and completing two treatments of Rituxan, I finally went into remission.

During this process, I knew that I wanted to meet others with ITP or be involved with a community that understood me. I knew how rare it was and somehow I came across PDSA’s website when I did a Google search. I found out that there was a support group in Orange County and an annual walk that was held. That is how I met Melissa, Leilani, and Cathy. I am grateful to PDSA for bringing us together and providing resources for ITP patients. I have learned to be my own advocate by learning about ITP and being informed. I attended my first ITP conference in Chandler, AZ. It was such an incredible experience as I got to learn more about ITP with my parents. It put our minds at ease and it was so nice to be around those who could understand what we were going through.

I continue being involved with PDSA because I don’t want future patients to feel like they are alone. I want them to learn to be their own best advocates. I want patients and their families to find comfort in knowing that there is a whole community that can support them and an organization that will provide them with whatever they need to push through their journey. I definitely couldn’t have done it alone and I’m thankful to everyone that has supported me through out the years.

We first noticed that something might be wrong with Joey when he was just 2 years old. His body was covered in bruises way too many to count. We expressed our concerns during Joey’s 2 year checkup, and his pediatrician ordered lab work. Late that night, the phone rang. The doctor said Joey’s platelet count was only 18,000 and told us to come straight to the emergency room, “Your son could be bleeding internally,” he said. After several more tests, Joey was diagnosed with immune thrombocytopenia (ITP). He spent the rest of the year in and out of the hospital trying to bring his platelet count to safe levels.

We were handed the diagnosis of a rare disease, had few answers, and began to worry. We had so many questions about Joey’s future. Will Joey have a future or can he bleed to death? Will he be able to live and play freely like other children? Will he be happy? Overwhelmed and helpless, we couldn’t help but feel that we were somehow letting Joey down. As parents, we try to protect our children from the dangers in the world, but how were we to protect Joey from something we had never even heard of?

While finishing up my freshman year spring college exams I found that I was bruising easier than normal. I thought that it was some weird bruise rash that would go away, but the bruises only got bigger and darker. I went to my primary care physician and the next morning I was woken out of bed by a call from her saying, “Go straight to the emergency room because your platelets are dangerously low. They are already expecting you.”

Luca was an energetic, considerate, loving boy who always had a smile on his face, even when life presented him with challenges.

Luca was diagnosed with ITP, an autoimmune blood disorder, just after his 7th birthday. He had developed a rash-like outbreak on his back called petechia. The doctors who first assessed him thought he had been hurt and questioned us about potential child abuse. Bloodwork was arranged and we learned his platelet level was only 27K. Normal platelets range between 150-400K. We were told Luca would need to be hospitalized however once our hematology team was consulted, we were told that was not necessary.

We were cautioned that Luca could have cancer so we were very anxious for our hematology team to figure this out. Fortunately, he did not have cancer, and no other obvious medical concerns. That first year with ITP Luca did not have any bleeding episodes and his levels averaged between 10-40K. He had mild-moderate clusters of petechia that developed off and on and large bruises that appeared with minimal injury but no real spontaneous bruising or bleeding. Not even a nosebleed. We made modifications to our daily lifestyle to keep Luca safe. We thought of ourselves as lucky. Luca was considered a non-bleeder and we followed the ‘watch and see’ approach. We were hopeful his ITP would be temporary and would resolve within a year. This was not the case. Once we knew Luca’s ITP was chronic, four-day high-dose pulse treatments of prednisone were used on two separate occasions at our request to a) establish if he would respond to steroids, and b) elevate his levels enough to travel safely. Both times, Luca responded very well. His platelet levels increased above 150K, and were sustained at elevated levels for weeks at a time. During the second year of Luca’s ITP diagnosis his average platelet count slightly decreased. He had occasional nosebleeds that were mild and lasted less than 30 minutes. He continued to develop petechia and large bruises. He developed a hematoma on his side after jumping in a pool several times wearing a life jacket.

During the third year of his diagnosis, things changed. His average platelet count was always below 10K. His platelet levels did not really fluctuate. They just stayed very low. Half-way into this third year with ITP Luca became a bleeder. During this time, Luca started experiencing frequent long-lasting nosebleeds, some of which required an emergency room (ER) visit to stop. He developed mouth blisters, gum bleeds/wet purpura, widespread petechia, lots of bruises, stomach bleed including throwing up clots, and hematuria. He developed a broken blood vessel once in his eye that we suspect was due to his low platelet levels. He started to also develop petechia on his head that would bleed and scab over. He often experienced random headaches, on average one every six weeks at least, that would quickly resolve with Tylenol. Sometimes these headaches were in the morning. He never required a CT scan since his headaches often resolved quickly on their own with the help of Tylenol and we were informed often that brain bleeds are rare.

Devin Winter was a fun-loving young man. He enjoyed watching funny movies and reciting quotes from them at just the right time. He also enjoyed writing poems, playing board games, funny card games and our annual New Year’s Eve crazy bowl game at Hi-Top Bowl, which is where the idea for Devin Bowl came from. Devin loved to travel, anything from camping to trips around the world. He just loved to get away, where he had no decisions to make. Devin had Autism which made it difficult for him to maintain relationships, leading to depression and OCD. Along with Autism, he had ITP and ALPS.

In September 2019, at the age of 24, during a bout of ITP, he had a significant brain hemorrhage, and at the time, had near zero platelets. Because of this, the doctors were unable to do the necessary surgeries, and Devin lost his final battle on September 20th. Since then, the family hosts an annual event to raise awareness of ITP and ALPS and raise funds for research through PDSA.

If you would like to learn more about Devin’s life, or read his poems, you can find them in his book. All proceeds from book sales go to PDSA.

I have had ITP for 18 years now, but my journey started when I was just 10 years old. I went for my yearly well check in before school started and was found to have very low platelets.They sent me straight over to the children's hospital with little explanation as to what was going on. Very tearful and nervous I went through countless more tests and confirmed that I did in fact have ITP. Which explained all the bruises I had from softball and gymnastics. They assured us that this is usually something that children outgrow...lucky for me we later found out that I am with the small percentage of patients that carry ITP diagnosis from childhood to adulthood. I had my first treatment at the children's hospital that same day with the IV treatment Winrho. I had to come back frequently for blood tests and treatments all through middle and high school. I was limited to the activities I could be a part of, which was hard in school, being different and feeling left out. Sports, gym class, backpacks, textbooks, pools and amusement parks were all part of things I was very limited to do as my doctor did not want me to have any contact activities. After close monitoring they soon realized I was not easily treated/controlled, and this would in fact not be something I grow out of. My platelets have always ranged between 0 and 30,000. Over the years I have tried every medical treatment available, injections, IVs and oral medication; and unfortunately, have failed them all except one. I am now on the oral medication doptelet and this has worked for me for the past 3 years. Even on treatment our goal is to stay above 20,000 platelets. It has been a rollercoaster of finding a treatment that would work for me. I am now 28 years old and continue this lifelong journey with the support of PDSA and the friends I have made.