During the pandemic, actor and health advocate LeVar Burton wasn’t seeing his doctors like he once was – and he knew he wasn’t alone. Nearly 41% of US adults surveyed in 2020 said they didn’t feel comfortable visiting their healthcare provider in the months following the pandemic.1 While LeVar Burton does not suffer from a myeloproliferative neoplasm (MPN), unfortunately for the 200,000 people living with myeloproliferative neoplasms (MPNs), a group of rare, chronic and progressive blood cancers, not making or keeping a regular doctor appointment could have serious consequences.2
While his mother did not have an MPN, LeVar Burton recalled how she did not manage her health properly in her later years, motivating him to partner with Incyte on the “You Have To Go To Know” campaign. The initiative is meant to encourage those living with MPNs to make and keep their doctor appointments, even during the most challenging of times—a global pandemic.
Because MPNs cause the bone marrow to not operate correctly, the body can produce too few, or too many, red or white blood cells or platelets. MPNs include polycythemia vera (PV), myelofibrosis (MF), and essential thrombocythemia (ET); they can affect people at any age but are typically found in older adults.2 Common symptoms are fatigue, headaches, and dizziness—signs that can be mistaken for aging and are often overlooked.3
Since the symptoms are easy to miss, many patients struggle to receive an accurate diagnosis, and actively monitoring their disease can be a challenge. For some, a headache is just that, but for some MPN patients, it can be their body signaling that their condition may be progressing.4 That’s why regular and proper management is so important.
LeVar has put his creativity and mastery of storytelling to use to spread the word far and wide, literally.
LeVar has also had the chance to talk with people living with MPNs and to hear their stories. He was touched by inspiring stories of resilience and hope that show it’s possible to manage life with a rare, chronic blood cancer. He feels those voices can be just as important as his own in helping to remind others with an MPN to be present and advocate for their care.
“I strongly believe in the power of seeing ourselves through the experiences of others,” said LeVar Burton. “The personal stories of people with MPNs moved me, almost beyond words, yet also lifted me up and empowered me to support the MPN community as we continue to navigate this time of uncertainty.”
Kathryn, a teacher who lives with an MPN, shared her story with LeVar. She explained her health journey, its ups and downs, and how she learned to never shy away from those important healthcare appointments and communicating how she felt with her doctor and supportive family.
“Though our world was turned a bit upside down, I’ve strived to maintain open communication with my doctor, and be my own best advocate by sticking to those important appointments. So, I strive to be careful and honest when I am feeling unwell, and listen to my body.”
In listening to stories like Kathryn’s as well as MPN experts, LeVar hopes to highlight lessons learned so that others can establish strong health management plans early on. Some tips that LeVar would like to pass on are:
- For a rare and often misunderstood disease like an MPN, it’s important to connect with others living with MPNs and build a strong support group.
- Regularly track all signs and symptoms, and communicate any change with your MPN expert or healthcare professional.
- Establish a strong, trusting relationship with your MPN expert and care team.
- Play a vocal, active role in your disease management. Ask questions, no matter how small they may seem.
- Finally, make and keep your appointments with your doctor. MPNs are a progressive disease. If you miss an appointment, you miss a critical opportunity to monitor your MPN.
You have to go to know…because your MPN isn’t waiting.
Visit www.VoicesofMPN.com to learn more about MPNs and explore education and resources available for those living with an MPN.
The content presented in this article is not medical advice and should not replace a conversation with your Healthcare Professional, who is the best source of medical information about your individual diagnosis and management plan.
©2021, Incyte Corporation. All trademarks are the property of their respective owners. MAT-HEM-02685 12/21
1. Anderson KE, McGinty EE, Presskreischer R, Barry CL. Reports of forgone medical care among US adults during the initial phase of the COVID-19 pandemic. JAMA Netw Open. 2021;4(1):e2034882. doi:10.1001/jamanetworkopen.2020.34882
2. MPN Research Foundation. Understanding MPNs. Accessed November 18, 2021. https://www.mpnresearchfoundation.org/understanding-mpns/
3. Leukemia & Lymphoma Society. Myeloproliferative neoplasms (MPN) research funded by LLS. Accessed November 18, 2021. https://www.lls.org/research/myeloproliferative-neoplasms-mpn
4. Leukemia & Lymphoma Society. Polycythemia vera facts. Accessed November 18, 2021. https://www.lls.org/sites/default/files/file_assets/FS13_PolycythemiaVera_FactSheet_final5.1.15.pdf