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Being diagnosed with a rare, chronic blood cancer like essential thrombocythemia, or ET, can feel overwhelming and isolating.
In the United States, approximately 24 out of every 100,000 people are currently living with ET. Because ET is uncommon, it may be hard to know where to turn for clear, trustworthy information—especially early in your journey.
Learning more about ET can help you feel more prepared, informed, and confident on the path forward.
What is ET?
ET is a rare, chronic blood cancer that starts in the bone marrow where blood cells are made. In ET, the body makes too many platelets (blood cells that help with clotting) and may also make too many white blood cells.
For Raqueal, a mother of two and tech professional in Arizona, the journey with ET began during her first pregnancy, when routine bloodwork showed elevated platelets. At the time, she was left with more questions than answers and felt frustrated by the uncertainty of her doctor’s watch-and-wait approach.
Raqueal’s story, which is featured in The MPN Pod: Stories From the Marrow, reflects something many people living with ET may recognize: sometimes the diagnosis is only the beginning of trying to understand what ET means for your health and how to navigate the path forward.
ET is more than just platelets
Because ET is often monitored through bloodwork, it can be easy to focus mainly on the numbers. While your platelets and other blood counts are important, they’re not the whole story of how ET may affect your daily life.
In fact, 71% of people with ET report fatigue, 47% experience disrupted sleep, and about 75% say it causes emotional distress, such as anxiety and worry.
For Raqueal, fatigue has been one of the biggest day-to-day challenges of living with ET. She described days when her body feels heavy, she doesn’t have the energy to keep up with her four-year-old, and routine responsibilities take extra effort. Raqueal also shared how difficult it can be when others can’t see what she’s going through on the inside.
“It’s extremely hard, especially when you are dismissed,” she said. “Because I don’t look like I’m sick or anything on the outside.”
That invisibility can make ET feel isolating. You may look “fine” to others, even when you’re exhausted, trying to make sense of life with a chronic blood cancer, or just feeling “off.” That’s why it’s important to let your doctor know about all the symptoms you’re experiencing—even if you’re not sure they’re related to your ET.
Monitoring matters—even when things seem stable
ET is a chronic blood cancer that can change slowly over time, even when you’re feeling well. Regular testing and monitoring help your doctor track your platelets, white blood cells, and red blood cells, while watching for potential risks, including blood clots and disease progression.
Staying aware of changes in your body and talking openly with your doctor can help you move from simply watching the numbers to understanding the bigger picture of your ET care.
Advocating for the support you need
Wherever you are on your ET journey, finding a doctor you trust and feel comfortable talking with openly is an essential part of the ET puzzle.
Raqueal described some of the appointments after her initial diagnosis as feeling “transactional versus collaborative.” She often left without the answers she needed or a clear understanding of what came next. After finding a specialist who listened to her concerns, Raqueal felt more supported in her care.
Her advice to others is simple but powerful: Speak up. Ask questions. And if something is affecting your daily life, bring it into the conversation.
“These are the times that you speak for yourself. You advocate for yourself. Because if you don’t, then you’ll be left with the uncertainty of what to do going forward.”
Taking a more active role starts with information
Whether you’re newly diagnosed or have been living with ET for years like Raqueal, reliable information and resources can help you put the pieces together and be a better self-advocate.
Visit PieceTogetherET.com for clear information about ET, tips for talking with your doctor, and practical tools such as a symptom tracker to help you take a proactive role in your care plan.
Watch Raqueal’s full story: A young mom’s journey with ET
In her episode of The MPN Pod: Stories From the Marrow, Raqueal shares how her ET journey began, what it was like searching for answers, and how finding the right doctor helped her feel more supported. Watch her story to hear more about living with ET, speaking up during appointments, and building a care partnership that works for you.
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US-ET-2600062 (v1.0) 07/2026
