On November 18th, 2024, the Global MPN Scientific Foundation hosted a webinar to address the challenges faced by young adults (AYA) and pediatric patients with myeloproliferative neoplasms (MPNs). Dr. Nicole Kucine and Dr. Marta Sobas led the discussion on treatment strategies and patient experiences.
Content guide
Young Adults – Challenges and Solutions with Dr. Marta Sobas
Dr. Sobas highlighted the transition from pediatric to adult care, emphasizing the need for personalized treatment for young adults. She discussed options like Jakavi and stem cell transplants, and the mental health challenges faced by young patients managing the emotional burden of living with MPNs. Young Adult Patients like Paula, Mari, Paulina, Holly and Judit shared their struggles with MPN treatments, emphasizing the importance of emotional support and the difficult balance between treatment and side effects.
Interview with Australian MPN Patients
Australian patients shared their real-life experiences, discussing the emotional and physical toll of MPNs. Their stories underscored the need for support networks and mental health care in coping with the disease.
Pediatrics – Challenges and Solutions with Dr. Kucine
Dr. Kucine discussed the challenges of treating pediatric patients, focusing on treatments like interferon and the promising potential of Besremi. She emphasized the growing need for age-appropriate treatments as pediatric patients transition to adulthood.
One key moment involved Dr. Kucine addressing the importance of early diagnosis, as seen in the case of Noa, a child diagnosed with MPN who now leads a normal life. Noa’s condition has been stable for the last two years, with no medication required for the past four years. Dr. Kucine reminded everyone that children, despite their illness, should still be able to experience a childhood, emphasizing that MPN can sometimes be sporadic.
What’s Next for Pediatric and AYA MPN Patients?
As the webinar concluded, experts discussed the future of MPN treatment in pediatric and young adult patients. The need for greater collaboration and research into age-specific treatments was clear. The webinar underscored the importance of support networks, whether through patient organizations or healthcare providers, to ensure that young patients have access to the best possible care.
Additionally, experts encouraged attendees to stay informed and connected with others in the MPN community. Through platforms like MPN World, patients and caregivers can access valuable resources and connect with others facing similar challenges.
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