The Roller Coaster of Chronic Immune Thrombocytopenia

It was my final year of college and, like any senior, I was looking forward to graduating, celebrating with friends, and getting started with my career. I was 21 years old when all of that changed.

I first noticed bruises all over my body. I didn’t know what was wrong, so I went to my primary care doctor for testing, thinking it would be a minor issue. Later, my doctor called. With fear and uncertainty in her voice, she told me my platelet count was extremely low and that I needed to see a hematologist immediately — it was an emergency. With the results we were seeing, the hematologist thought it was chronic immune thrombocytopenia (cITP), but he had to rule out other diseases because cITP is a diagnosis of exclusion. From what I have since learned, my situation was unique in that I received a diagnosis fairly quickly, whereas other patients often can be misdiagnosed or face a long road to diagnosis.

After I was diagnosed, I learned cITP is “a rare autoimmune disease where platelets don’t function properly. Platelets are the blood cells that allow the blood to clot and keep blood vessels intact, and platelet levels that are very low can result in dangerous internal bleeding and bruising.”

For me personally, the most difficult part of living with cITP has been its impact on my schedule. From the amount of time I devoted to getting blood tests, going to the doctor and waiting for test results, coupled with the symptoms of the disease, learning to live well with cITP was incredibly challenging. In college, while my friends were out socializing and enjoying the last few months of our final semester, I spent most of my free time at the doctor’s office and adjusting to the difficulties that come with this disease.

The emotional roller coaster, fatigue, and interruptions to life that accompany cITP can be scary and frustrating. As someone living with this disease, I encourage healthcare professionals managing cITP to learn as much as they can about how the disease affects their patients’ lives. It’s important that practitioners understand the full impact of the disease and can ensure their patients have the resources they need.

My advice to anyone diagnosed with cITP is to make sure you have a support system to lean on — whether it’s your family, friends or the advocacy community. Work with your healthcare team to gather as much information as possible, which will help you understand all of your options, and seek out the support of advocacy groups. When it comes to cITP, there’s no truer saying than “knowledge is power.”

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