My name is Haley; I am 30 years old and was diagnosed with ITP in 2020. On top of the COVID-19 pandemic, an ITP diagnosis was not an easy thing to navigate!
Prior to my diagnosis, I began having some odd bleeding symptoms, but had been noticing excessive bruising and fatigue for the last few years. I had my daughter in 2016, and it seems that the symptoms started sometime after she was born.
In the summer of 2020, I started having long-lasting bleeding episodes which I attributed to a hormone problem, so I saw my OB/GYN. My husband and I had been trying to conceive for a few months at this point, so it was good to get a check-up anyway.
Everything looked normal, so the doctor said, “Let’s do some bloodwork, and we will check your thyroid levels!” I was certain this would be a quick fix… boy, was I wrong!
When the CBC results became available in my portal, I noticed that my platelets were at 46,000 and that the normal range was 150,000-400,000. I didn’t really understand, but I called my doctor, and they repeated the test in case it has been a lab error. After the next test, the results showed my platelets at 55,000. I was then referred to my general practitioner, and from there to a hematologist. I was super nervous to visit him, as he was located in our local cancer center. He ran a number of blood tests, performed a blood pathology, and did an abdominal scan to check my spleen.
Incidentally, a lesion was found on my liver! It scared me so badly, but then a CT scan, RBC scan, MRI, and finally a liver biopsy confirmed that the lesion was benign. Phew!
But back to the platelets… Since June, I have had levels anywhere from 35,000 to 80,000. I’ve only tried treatment once – a four-day pulse of dexamethasone – and sadly, it did not work for me. I also contracted COVID-19 in November and experienced my first bout of petechiae due to Aspirin use. But thank goodness, the petechiae resolved quickly once I stopped taking Aspirin.
While my diagnosis is still not definitive, I want to share my story to help others who are in the same boat as me. It is my desire to be a resource, because getting a rare autoimmune bleeding disorder like this can make you feel so alone! I will always wonder what caused my ITP, as I know I did not have it in 2016 when my platelets were over 400,000 when I delivered my daughter. Since her birth, I’ve had several viruses and vaccines, and even traveled abroad to Rwanda for mission work. I am on staff for a church as a Communications Director and my dream is to continue to work to which I feel called. I am happy to say that I CAN continue it, in spite of this diagnosis.
Being a hypochondriac, my worst fear was always getting an illness, but I am grateful for the support systems I have found. I believe the Lord has been with me through my worst fears and that He has never left my side. My faith keeps me going, and I’m grateful for my church and family who have supported me through all of this.
I am hopeful that one day I will be able to have another child and help comfort others who are scared and newly diagnosed like myself!