Michael's ITP Journey

My name is Michael. I live in San Francisco.

In late 2023 I was diagnosed and spent 21 days in the hospital with Immune Thrombocytopenia—or ITP. 18 of those days I had ZERO platelets. I had developed bleeding from my nose and gums, accompanied by blood blisters in my mouth. I suffered from extreme fatigue. My hemoglobin was low. I was bleeding internally.

The doctors tried everything. I was a living chemistry experiment. Finally, after 6 transfusions and multiple medications, something worked, and I was released.

Afterwards I went through a lengthy period with one of the drugs I was given in the hospital. My platelets wandered from the very low to the absurdly high. Treatment was wildly inconsistent.

I sought second and third opinions and finally found a drug that has stabilized my platelet level. I have been taking it for over a year now. Not everyone finds a drug that works so well, and I am grateful.

I am retired now, and ITP has provided opportunities that are important to me. That I care about, working as a volunteer with the following organizations:

PDSA: I co-facilitate the PDSA’s Northern California ITP Support Group, attend conferences and patient forums, and occasionally speak of my ITP journey in support of ITP initiatives.

Stanford Blood Center: I’m the “juice and cookies guy” on the Stanford Bloodmobile. When healthy I participate in roughly four blood dives a month, collecting 120+ pints of whole blood and red blood cells. I make it a point to give extra thanks to our donors, emphasizing the value of their donation to both the ITP and Autoimmune Hemolytic Anemia (AIHA) communities.

Pharmaceutical Companies: I occasionally work with drug manufacturers as an ITP patient advisor, providing general input on the ITP patient experience, as well as patient educational materials.

So how can you help? ITP can happen to anyone: the young, the old, male and female. Currently there is no specific cause of ITP, and no consistently effective treatment. Thankfully, PDSA provides incredible patient support and much needed seed money for research to better understand and treat ITP. If possible, I ask that you please support PDSA and this fundraising effort in any way you can.

Thank you!

John's ITP Journey

Hello, my name is John Phillips. I live in California. I am 27, I just graduated from college and I got married to my beautiful wife Serina. Life is great now, but ITP completely disrupted my life. It was a very rough journey that drained me in every way. The brain fog, soul crushing fatigue, and deep depression made it very hard to get through every day. ITP also completely destroyed some dreams I had for myself. ITP tried to consume who I was. It has been a long journey on this rollercoaster ride and it's not over yet. My goal in life is to help others and I hope that today I can give you all insight into my life and make a difference for future ITP patients. You are not alone.

I have had ITP for just over ten years. I was diagnosed in March of 2014. The day before my 17th birthday in my junior year of high school. I was about to wrestle on the first day of post-season wrestling practice, there had been a long break but I had been training for months and wanted to try for varsity this season. My mom had called the doctor about some bruises I had been getting, one was very large covering my whole tricep and it had a lump in it, and she came to take me to the doctor right before practice started that day to get checked out since the advice nurse was very concerned. I also had a few bloody noses and coughed up bloody phlegm, and had petechiae all over my body.

I had blood work ordered by my doctor who mentioned it was possibly ITP and to not look it up, but wait for him to get back to us. My mom immediately looked it up because we had never heard of it and she was concerned. I went to bed and was woken up by my mom who had a phone call from the lab telling her to take me to the ER and be very careful with me because my platelets were at 7,000. The doctor called right after and said we could wait until the next week to go in to see the pediatric hematologist. My mom decided to take me to the ER. Several tests were done and a little after midnight I was told I likely had Idiopathic Thrombocytopenic Purpura. The name has since been changed. This was now my 17th birthday. I was admitted and spent several days in the hospital. I was given 9 bottles of IVIG back to back. I had an excruciating headache and was vomiting. I got a CT scan to check to see if my brain was bleeding and they determined I had aseptic meningitis from the IVIG and had to give me morphine and nausea medication. I was miserable and scared and didn't know how much my life would change. I even threw up my birthday cupcake. Thankfully I didn't wrestle that day with such a low count, we didn't know how much danger I was in!

Before diagnosis, school was easy and I was healthy. I had friends and enjoyed school. After diagnosis school was a battle. I was in AP and Honors classes and had to miss school to drive to the pediatric hematologist 45 minutes away for infusions. I had nausea and vomiting even with a slow infusion and getting pre-treatment to prevent that from happening. When I was diagnosed with ITP, I had no idea that I should have only been given one bottle of IVIG over many hours very slowly. I had no idea that each bottle cost $25,000 and took so many blood donors to make one bottle. I trusted the doctors to know what they were doing and how to help me. I started prednisone and got infusions several times. I had a bone marrow biopsy to make sure I didn't have leukemia. Everything but my platelets were normal, so they were positive it was ITP. My entire world was turned upside down.

I had horrible side effects from all the medications I tried and the boosts in my platelets were very small and did not last long. I gained 18 pounds in one month with Prednisone and my friends couldn't understand how badly ITP affected me. ITP isolated me from everyone but my family. I was devastated. I also planned to follow the tradition of men in my family and join the military. I thought this would have been the best way for me to make my family proud and set me on the right path in life. When I found out I could never be accepted, I was crushed. My life and my goals for the future were stolen from me. I began to withdraw from everything, even my friends and family. Nobody that I knew could understand what I was going through. I was truly alone. I struggled to remain sane amidst all the infusions, blood draws, my reactions to treatments, and the daily uncertainty of living with ITP. I was miserable for the rest of high school and college. ITP ruined many experiences and events that were supposed to be fun. It became the focus of my life and affected everything I did. I could not escape it. For example, I couldn't ride roller coasters on my Senior Trip. I struggled to enjoy anything and I often had to pretend that I was happy. I was beyond tired and became depressed. Despite this I managed to keep my grades up and graduated from high school with many scholarships. I decided to stop treatment and just have low platelets because the side effects on top of my regular fatigue and brain fog were not worth a temporary boost in platelets. My fatigue was so bad that I had to sleep in my car between college classes. I didn't have a social life. My platelets were hovering around 25,000- 50,000. I was nervous when I had to get my wisdom teeth out and get an infusion so that I wouldn't bleed too much. I had to switch to an adult hematologist and I had a horrible experience. The doctor wouldn't listen to me about my fatigue or my concerns about treatment. He insisted that I would take steroids if I had another drop in platelets and told me that I wasn't fatigued. He invalidated everything that I was going through.

My mom was with me at the appointment and encouraged me to change doctors. I did and was able to get the head hematologist/oncologist for the hospital. He asked me what he could do to help me. He ordered blood work and a scan of my spleen. He discovered that I had general inflammation in my body, but didn't see an obvious reason for my fatigue. I felt seen and heard by him because he actually listened. I felt confident in his knowledge and could feel his concern for me as opposed to the other doctor who saw me as a number.

On my 21st birthday I ended up back in the same hospital room that I was diagnosed in and I had a critical count of 2,000. I got my labs checked because I had a small dot of blood on my head that my mom noticed. She got a call that I was critical and she called me to go into the hospital. I didn't want to go and refused so my aunt had to come get me and take me in. I was in a horrible state, feeling like I was starting all over again and was at rock bottom, repeating the same cycle. I tried Rituximab and it didn't help at all.

After my relapse and an entire summer spent in bed with no interactions except for my immediate family, I asked my doctor what my options were and decided to get my spleen removed. Lucky for me that splenectomy worked and I had 5 years of remission.

Over a year ago I had some bruising and felt the same fatigue that I used to have. I had a CBC done and I was low again. I felt mixed emotions and waited for an appointment with a new hematologist after getting kicked off my mom's insurance due to my age and worried about having to start all over again with new doctors. I was not impressed with the doctor I saw. He had ITP as a child and went into remission but completely invalidated everything I was going through/. Even though I had been bruising and experiencing fatigue for several months, he told me that I was cured and didn't seem concerned about hearing my history or opening the door to any future treatment options. He treated me like a number and an inconvenience, just like the first adult hematologist I saw. It felt like I was back in the exact same place I was before in the middle of ITP. I am seeing a different doctor now and I do feel more prepared to mentally deal with ITP this time and I have more supporters in my life.

My family, close friends, and now my wife are the ones that keep me going. My mom and I attend the ITP conferences together every summer and now my wife attends with us as well. She was able to hear all the new information with me and meet all the people that have been on this journey with me in the ITP world. I met Serina, my wife since April of this year, when I was in remission. It was rough and frightening to not only go out of remission, but have to deal with life with ITP all over again and wonder how this would affect our relationship. But after bringing her to the 2023 PDSA conference, I was no longer afraid. I was overwhelmed with how welcoming and friendly everybody was to Serina and how easily she fit in.

PDSA has been amazing for me. I was able to start and run a PDSA support group with my mom Dawn and find it helpful to talk to others and share my story with them. PDSA staff and volunteers are like family to me now and I have regular check-ins with them. My mom did research when she heard the doctor first mention ITP and found the Facebook page. Then she found the website and saw that there was a conference in our state. We attended and it was an amazing experience. We learned so much about ITP, learned about the support groups and signed up to start one. I was no longer alone. I still struggled with everything, but PDSA was always there to support me and my family. We have been able to hear from ITP experts every year and we feel that we are more informed about ITP than most doctors. I feel validated by the studies done on fatigue by PDSA partners and have been able to share my experience on the registry they created. I also won a scholarship from PDSA to help with college expenses. PDSA connected me with a professional baseball player who had ITP and then went into remission after a successful splenectomy. I was able to meet many of the A's players and go to games. We had support group meetings at their coliseum and got signed memorabilia. I could go on and on about how PDSA has made my experience as an ITP patient better, they have been a lifesaver for me and so many others.

People with ITP often obsess about their numbers, symptoms, treatments. It can take over your life. One thing I would recommend for people who are struggling with the dark side of itp is finding an outlet for negative emotions and to keep living life, do not let ITP control you. I went too long letting myself struggle with the pain and depression and it made things worse for me in the long run. Find something simple that makes you happy and make choices that are good for you. Doing things that were great for me such as mindfulness practices, seeing a counselor, having a social life, creating art, serving on nonprofits boards as a grant manager, pursuing my bachelor's degree in communication studies have helped me immensely. There are major disruptions in a person's life when it comes to living with an autoimmune disease like ITP and many questions go unanswered. The more resources and help we get the better our outcomes are for us.

The pain, fatigue, brain fog, depression, side effects of medications, and everything else that I have been through helped me realize that ITP is a gift. It has made me into a kinder, better person and set me on the path to make a difference. My advocacy for PDSA translated to other parts of my life. I am the grant manager for several Sacramento nonprofits and I was a representative for Vitalant, managing blood drives for several years at my local community college while I was in attendance there. I have gone to many blood drives in my area to thank blood donors, share my story, and educate donors on the dire need for blood product donation to help save the lives of people like me. Making the world a better place for people with ITP has become my mission. The support group has been a much needed outlet for me on many occasions. I am happy to have taken the next step and participated in panels with pharmaceutical companies, the FDA, and I did the virtual Capitol Hill week meetings. I am an ambassador at every conference. I am also helping this year by facilitating a small group discussion.

I felt I needed to take control of my life and try to turn the negative experience of life with ITP into a positive. It hasn't been easy but I am proud of the man I have become and the impact I have had on others. I am not alone. I have my wife, mom, and my big PDSA family to help me through life with ITP once again. I'm stronger than I've ever been.

Dawn's ITP Caregiver Journey

I am Dawn Phillips. My journey with ITP started before I even knew that ITP existed. My son John was getting random bruises for no reason in 2014. I started taking pictures of them because they were strange as he never bruised even when he was wrestling and he was on a break from the sport. He gradually became covered with bruises and one took up the whole back of his upper arm. Out of concern, I called the doctor's office and I was told to bring him right in. Fortunately, I stopped him from his first day of postseason wrestling practice after school and took him in. The doctor saw petechia along with the bruises and mentioned it might be ITP. He had John get a blood draw.

We got a call from the lab at 9 o'clock that night telling us to go immediately to the emergency room and to be careful driving over there. Then the doctor called and said John's platelet count was only 7,000, but I could wait until the following week and bring him into the infusion center for IVIG. I didn't know what any of that meant, but I was scared for my child and I took him straight to the ER. He was admitted to the hospital and early the next morning he was officially diagnosed with ITP. When I understood what it was I was so grateful that he didn't wrestle with such a low platelet count, but sadly he never wrestled again. It was his 17th birthday and that was the beginning of our roller coaster ride. More than a decade has passed with a lot of tears, heartbreak, and also joy. He had to give up on some dreams and even lost his spleen. We had to find a new normal several times throughout the process. We learned so much about ITP through PDSA.

We were fortunate to be able to go to the conference, which happened to be in our state of California, the year he was diagnosed. We instantly made friends and my son felt understood for the first time since his diagnosis. We started a support group shortly after that and it is still running strong. We are ambassadors for new people at the annual conference every year. John has spoken to the FDA and staffers of Congress members to raise awareness. I can say that ITP has made him truly appreciate life and also made him grow up very quickly. We are forever grateful for the support we have received from PDSA and people who are living with ITP in their households. We want to do a fundraiser to give back and help PDSA spread awareness about ITP, as well as providing help to those who need it through the many programs they offer. My best advice as a caretaker is to reach out to others for help when you need it and make sure you take care of yourself too. There are support options for everyone!