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.”