(BPT) – Caregivers play a critical role in the physical and mental well-being of countless patients affected by rare diseases, including myeloproliferative neoplasms (MPNs), a group of rare, chronic and progressive blood cancers.1 Building upon the necessary trust and accountability, caregivers develop strong, personal bonds with those they care for. When a family member or loved one takes on the role of a caregiver, that bond often grows stronger.
Over the past year, actor and health advocate LeVar Burton has partnered with Incyte on a campaign called ‘You Have To Go To Know’ to encourage those living with MPNs and their caregivers to prioritize their health through regular visits to their doctor. Burton’s passion for health advocacy stems from the struggles he saw his mother face when she missed doctor appointments. While she did not have an MPN, her growing health challenges required doctor visits and follow-up appointments and inspired Burton to help others prioritize their own care.
In recognition of Blood Cancer Awareness Month and to raise awareness of MPNs and the importance of caregivers in MPN management, Burton recently spoke with Jaden, a young caregiver, and his mother, Jessica, who has been living with an MPN since 2016.
During their conversation, Jaden shares that he was only 10 years old when Jessica was first diagnosed with an MPN. Following her diagnosis, Jessica began experiencing common MPN symptoms including fatigue, and Jaden took it upon himself to provide care and support her throughout her MPN journey. From taking care of their home to cooking meals and accompanying her to doctor appointments, Jaden began supporting his mother in any way he could. Over the years, he also raised awareness of MPNs and conducted several fundraisers in support of continued research on the condition.
Fast-forward to high school and Jaden is still very involved in caring for his mother throughout her MPN journey.
‘When I graduate high school, or college or the Air Force, I want to see my mom cheering in the stands. The thought of her not being there motivates me to do everything in my power to support her, including accompanying her to doctor appointments and asking questions to her doctor,’ shared Jaden. ‘While caregiving can be challenging, it’s important that I remind myself that there are some situations that I can’t control, but I will always stand by her side to provide comfort and support.’
For people living with MPNs, the body’s bone marrow does not operate correctly, causing it to produce too few or too many red or white blood cells or platelets.1 MPNs include polycythemia vera (PV), myelofibrosis (MF), and essential thrombocythemia (ET).1 They can affect people at any age but are typically diagnosed after the age of 50, with most people being in their 60s and 70s.1,2 Common symptoms of MPNs, including headaches, fatigue and dizziness, are often misunderstood or associated with aging as well as a variety of diseases.2 Because symptoms can change over time, it is important for people living with MPNs to work closely with their healthcare teams.2 Tracking disease progression and having honest conversations about changing or persistent symptoms during doctor appointments can help healthcare teams to provide the best care for those with MPNs.
‘With Jaden’s love and support, I am motivated to prioritize my health and make sure that I’m providing him with the best care as his mother. Because MPN symptoms can change or progress over time, we openly communicate with one another and work closely with my healthcare team to track my symptoms through regular communication and visits to my doctor. While I may slip and tell my doctor that I’m fine, Jaden encourages me to be proactive and forthcoming with symptoms and changes because he knows this is the best way to manage my MPN,’ shared Jessica. ‘I also make sure we both focus on our mental health and have a life outside of my MPN.’
With resilience and strength, together they manage Jessica’s MPN in close partnership with her healthcare team.
‘I’ve had the privilege of speaking with many individuals from the MPN community to hear their unique journeys and discuss the importance of prioritizing their health through regular visits to their doctor. I am humbled by Jaden and Jessica’s powerful story and the strength, determination and teamwork they exhibit in managing this rare blood cancer. I am honored to share their story and the experiences of others to help raise awareness of MPNs,’ said Burton.
September is Blood Cancer Awareness Month, an important time to raise awareness of blood cancers and the role caregivers play in disease management. For those living with an MPN, tracking symptoms and having meaningful conversations with your healthcare teams are some of the best ways to manage your condition. If you haven’t seen your healthcare provider recently, schedule an appointment today – and keep it. Appointments with your MPN healthcare team offer important opportunities to identify and discuss how your disease may be changing over time, and when you miss appointments, you also miss out on those essential conversations.
You Have To Go To Know… Because Your MPN Isn’t Waiting.
Visit www.VoicesofMPN.com to learn more about MPNs and explore educational resources available for those living with an MPN.
©2022, Incyte. MAT-HEM-02968 08/22
1. MPN Research Foundation. Understanding MPNs. http://www.mpnresearchfoundation.org/Understanding-MPNs. Accessed May 31, 2022.
2. Leukemia & Lymphoma Society. Myeloproliferative neoplasms (MPN) research funded by LLS. https://www.lls.org/research/myeloproliferative-neoplasms-mpn. Accessed May 31, 2022.