Polycythemia vera burden
Polycythemia vera (PV) can impact nearly every part of your life,
from how you feel physically and emotionally to how present you are for your family, friends, and work.
How PV affects your mood, sleep, work, or relationships is just as important as your lab results. If you’re feeling tired, foggy, or just “off,” say something. These details matter.
For many people with PV, staying under 45% becomes an emotional burden as much as a treatment goal.
The 45% hematocrit (HCT) threshold can become a daily source of anxiety and fear—of relapse, blood clots, and the emotional strain that comes with constant monitoring.
You know best how PV affects your daily life.
Your doctor needs to hear about it to help you manage your burdens and expectations.
It's important to have an open and honest conversation with your doctor as you discuss your comprehensive experience living with PV. Consider keeping track of HCT levels, iron levels, and how symptoms are affecting your life.
How PV and its symptoms can affect quality of life
Even people with low-risk PV experience burdensome symptoms
In a recent study, nearly 9 out of 10 people with low-risk PV said they had at least one symptom. Some of the most common were feeling inactive or low energy (56%), tired or fatigued (87%), and itching (64%). Having low iron can also cause fatigue and brain fog.
PV symptoms have a meaningful impact in the lives of people living with PV
Symptoms may interfere with daily activities and result in reduced quality of life.
From rescheduling or canceling plans, to being unable to fully engage socially, your PV symptom burden can accumulate over time and feel overwhelming to manage.
Approximately 9 out of 10 people with PV are experiencing symptoms at the time of their diagnosis, but they aren’t always talked about, or even addressed, leaving them feeling isolated. Being open with your healthcare provider about what you're experiencing is key to getting the care you really need.
Approximately 2 out of 3 people with PV, even those with low-risk PV or less severe symptoms, report that their cancer symptoms reduced their quality of life, making them feel vulnerable and alone.
Nearly 8 in 10 people with PV experience emotional strain, including anxiety and stress related to their symptoms and disease.
In a survey of 380 employed people living with PV
Respondents reported that symptoms impacted the following
- 63% had to adjust family and social plans
- 52% were limited by pain and discomfort
- 48% had to adjust their daily activities
- 29% needed to cancel plans
- 23% needed to stay in bed all or most of the day
In another survey of 393 respondents
Almost half of people with PV had to make an employment change to accommodate their symptoms
- 27% left a job
- 22% went on disability leave
- 22% reduced work hours for ≥ 3 months