Chronic Immune Thrombocytopenia (cITP): Understanding the Big Impact of a Rare Disease
Meredith lives in New York City. She was diagnosed with Chronic Immune Thrombocytopenia (cITP) at the age of 21.
Dec 02, 2016
Author: Meredith P.
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 are often misdiagnosed or face a long road to diagnosis.
After I was diagnosed, I learned that cITP is a rare autoimmune disease where platelets don’t function properly1. 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 bruising1,2.
For me personally, the most difficult part of living with cITP was how it impacted my quality of life. 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. While my friends were out socializing and enjoying the last few months of college, 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 and the different treatment options affect their patients’ quality of life. It’s important that practitioners understand the full impact of the disease and can ensure their patients have all of 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.”
We at Novartis are honored to be working with Meredith to share her story. Click here to view her video on understanding chronic immune thrombocytopenia.
And for more information on ITP from Novartis Oncology, click here.
Saleh, Mansoor N., et al. "Safety and efficacy of eltrombopag for treatment of chronic immune thrombocytopenia: results of the long-term, open-label EXTEND study." Blood 121.3 (2013): 537-545.
“Immune Thrombocytopenia.” U.S. National Institutes of Health website. U.S. National Institutes of Health. Web. 2 August 2016.