THE ITP JOURNEY
Four ITP Warriors, a Mom & Dad and their fight against ITP
Itʼs been almost 13 years 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 last year with my hematologist/oncologist and rheumatologist, I am currently off all ITP and Lupus medications, and I am happy to say that my platelet count has been more consistently stable than before. And, when it dipped really low, my count came back up on its own. This journey has been difficult, stressful, and tiring, but also, interesting, inspiring and amazing. I know that my journey is not over, and I remain hopeful. In 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.
PDSA continues to support our efforts to raise awareness year after year, and I truly appreciate your continued support too.
My ITP journey started in February of 2016. I've had IVIG, prednisone, and Rituxan over the span of 6 months. I was lucky enough to find a treatment that worked for me and now my counts are above 100.
During this experience, I knew I needed to find information and answers about ITP. That's when I found PDSA and saw that they had a support group close to where I live. I knew that going would allow me to meet people who have struggled or are struggling with ITP. I also wanted to find a way to help and make a difference in our community.
Then I was put in contact with the right people and started helping out with organizing our walk last year. I've met amazing people through this experience and can't wait to meet more people at the conference in July! I'm also excited to be a part of our 6th Annual 5K this year in Fullerton, California and to be able to spread the word about ITP.
Joey's Journey - A family perspective on living life with ITP
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?
Eight years after the shocking diagnosis, Joey continues to struggle with ITP and so do we. He has endured a myriad of tests and doctor’s appointments. His biggest challenge has been being able to play like a normal kid. When Joey was diagnosed, he was restricted to “light play.” These restrictions have guided his way of life since then. Joey has been advised by his doctor that he will need to re-evaluate the sports that he participates in because it gets more dangerous for him since he never knows when his platelet count is low. We often find ourselves obsessing over Joey’s platelet count. It is always on our minds. Always. Every year we must educate his teachers and coaches about ITP and the importance of contacting us immediately if he is seriously injured. Joey feels embarrassed and has not shared with his friends his medical condition. He refuses to wear his medical ID bracelet. We get it. It’s hard being different from everyone else. So, can you imagine how hard it must be for him to navigate 4th grade living with a chronic condition without the support of his friends? His platelet count remains low and he constantly questions why he has ITP. Maybe one day he will share his condition with his closest friends.
When people see Joey, they don’t know his daily struggles, because he appears to be a “healthy” 10-year-old boy who tries to live a “normal” life. He does well in school and is part of many activities such as acting, baseball, basketball, soccer, dance, and his elementary school’s Leadership Academy.
Joey feels that the only solution to ITP is to find a cure and his dad and I share in his hope for people with ITP. Please help us and join Team Ikaika on Saturday, November 9th for our annual Pump It Up For Platelets Event. We hope to see you there!
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.”
For the next 13 months I got my blood drawn every two weeks hoping that my platelet level would be high enough to not be hospitalized. My treatment started with oral steroids which were only a temporary fix because my body became too dependent on them. Moving on to a different treatment option, I had my spleen removed since the success rate for a young, heathy adult was optimistic. Unfortunately two weeks later my platelets fell and I was put back on steroids. A few months down the road, during sophomore final exams, I had deep purple bruising all over my body, a petechiae rash down my legs and I got a bloody nose which never happens. My platelets fell so low that I was at a high risk of internal bleeding and needed a platelet transfusion. The same day I started my next treatment called Rituxan, a form of chemotherapy. After the 4 weeks of infusions and few months to get off the steroids, my platelet level returned to “normal” and I am happy to say that I have been in remission for 8 years.
I had never heard about platelets, let alone ITP. The feeling of not knowing what is wrong with you and being told there is no cure for what you have is something I will never forget. This is the main reason why I continue to raise awareness and help host this 5K event year after year. One conversation can be life changing for someone going through a similar experience. A close friend and one of my coworkers both had a family member get diagnosed with ITP within the last couple of years. Being able to provide them with the best and most current information possible in addition to seeing some of the worry wash away is one of the most rewarding feelings during that difficult time. Not only does ITP affect patients, but also family and friends who want to help but don't know where to start.
Being involved in PDSA has brought me countless friendships such as my fantastic 5K co-hosts Cathy Aldama, Leilani de Castro, Aandrea Hays, Kelly Torres and their families. I'm so very grateful that I am in a position to help others navigate through their own ITP journey and tough times. I truly believe that ITP was a blessing in disguise because of all the wonderful things I've been able to be involved in and support PDSA in accomplishing. I look forward to the future endeavors of the rare disease community wherever they may lead and seeing you at our annual 5K event!
Aandrea's (the Ugly Potato) Journey
At 22 years old, I was a sophomore studying biology at New Mexico State University and needless to say, I had bigger concerns than the bruises that were progressively taking over my entire lower body! To appease my mother, I visited the student health center where they drew my blood (TWICE!) and eventually explained to me that my platelets were at 13,000. I begged and pleaded for them to let me leave; I had a huge Comparative Anatomy and Embryology lab practical that I could not miss! (Again, I had my priorities!) I gave the nurse permission to discuss my medical information with my mom and went on my happy way. When I finished my exam, I could practically hear the *boom* from my parents breaking the sound barrier while driving to my school! I didn’t realize then that my life was about to be changed forever. From that moment on, I have had a lot of ups and downs from being asked to “not return” to my doctor’s office, taking 40mg of dexamethasone for weeks at a time, weight gain, acne, angry outbursts, several IVIG infusions, an emergency hospital admission, all the way to experiencing two separate remissions.
Overall, I have found the most comfort while educating myself. Thankfully, my mom found PDSA very early in my journey, and my parents and I attended our first conference just 4 months after I was diagnosed. It still scares me to think about how different my life would be right now if I had not obtained the knowledge that PDSA provided. Ultimately, PDSA gave be the courage to ask questions, and to be an advocate for myself in a doctors’ office. This has given me the ability to collaborate with my doctors and express my feelings, questions, and concerns about treatments, because ultimately it is my body!
Throughout this whole process my family has been a major support. My aunt, Angela Racoosin, is the one who originally coordinated with Melissa Hilsabeck to get us involved in the virtual Orange CA walk! You may have heard of us, we are the “Ugly Potatoes”. My family participates all over the country, from New Mexico to Kentucky to Washington D.C. and of course California. It was incredibly meaningful to see such an outpouring of support for me and for the organization that really changed my life. I hope to continue my involvement so that others who are scared, lost, or just need encouragement, can feel what I have felt being a part of this community of people!
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