Young Patients Talks

Global MPN Scientific Foundation
Webinar MPN Pediatrics and Young Adults (AYAs)

PART 1:
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.

PART 2:
Interview with Australians 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.

PART 3:
Pediatrics with Prof. Nicole Kucine

Living with a rare disease like an MPN can feel isolating. Today, during MPN Awareness Month, we invite you to listen to Judit speak about her concerns & coping strategies for living with Myelofibrosis, a rare bone marrow cancer.

Judit emphasizes the importance of seeking support through young patients groups, and taking care of her physical and emotional well-being.

Watch Carlota, a young MPN patient who received her diagnosis at age 16.

Carlota says that "Although the diagnosis is scary at first, there are people who can help us - experts, family and friends, that make it possible to live a normal life."

Hear what Carlota and young patients have to say about living with an MPN!

Myeloproliferative Neoplasms (MPNs) are a group of chronic, rare diseases of the blood-forming cells in the bone marrow, which are considered blood cancers.

Hear what Paula G has to say about living with an MPN and her hopes for the future!

Paula C, a young MPN patient, encourages others living with an MPN:

"Make the most of the moment and don't let the disease drag you down."

Living with a MPN diagnosis can be very challenging, especially if that diagnosis occurs in very young person.

Listen to what Paula C talk about living with an MPN!

As Dr. Sobas, PhD, Wroclaw Medical University notes: "MPN is mainly a disease of elderly patients and the research is mostly dedicated to this group of patients. Not yet to younger patients."