WFH NETWORK

Resilient Patients Do Play: Ask Frederica Cassis

Psychosocial Committee Secretary and World Federation of Hemophilia (WFH) Professional Member Frederica Cassis believes that comprehensive education—and a comprehensive healthcare team—are the foundation of the strong communities that nurture and support those living with a bleeding disorder. A true global citizen, Cassis lived in six countries across three continents before settling in Brazil. Exposed to the stark realities facing patients with little to no access to treatment while a student, she decided to pursue a career in healthcare. She found continued motivation in her desire to help children, believing they could benefit from play therapy and emotional support initiatives when factor was unavailable.

Cassis began pursuing her passion at the Hemophilia Centre of Hospital Das Clinicas, FMUSP in São Paulo, Brazil in 1994. Her experiences over the last twenty-five years have solidified her belief that psychology and mental health interventions are as important to a patient’s well-being as having access to treatment. Cassis believes that if patients and families receive psychoeducation and emotional support from an early age, their acceptance of their condition will be better, as will their adherence to treatment protocols. Support makes for patients who can be resilient in the face of physical and mental challenges, and able to face adversity and lead full lives.

Cassis’ first exposure to the WFH came at our WFH 1998 World Congress, held in The Hague, Netherlands. Inspired by the resolve of the patients and volunteers she saw there, Cassis went on to volunteer in many roles, but one project stands out: her work creating the now-renowned HemoAction Games. Through the card-based game, children embark on their very own “hemophilia adventure”. These adventures teach young patients and their families how to manage hemophilia while learning about the clotting process, the types of bleeds, factor infusions, and the physical activities that are suitable for them. The HemoAction Games resource, for which Cassis received the Inga Marie Nilsson Award, has proven to be so popular it has been adapted into an online version. Originally available in English, French, Spanish and Portuguese, they are currently being translated into several more languages so that even more children will be able to learn through play. Cassis also proudly notes that the new cards have an expanded scope that includes, among other topics, information about physiotherapy and inhibitors.

More recently, Cassis worked with the WFH Educational Materials team to produce Hemophilia, relationships and intimacy: answering your questions, a video that seeks to answer common questions patients have regarding this subject.

Cassis acknowledges that even with all the advances in care, there is still much work to do in pursuit of Treatment for All. In Brazil—as in many countries around the world—there is a struggle to reach all those living with a bleeding disorder. In addition to geographic barriers, those performing outreach must also overcome cultural bias and a lack of education about bleeding disorders. Cassis looks forward to the day when all patients receive the kind of support and education that allows them to feel empowered and in control of their future.

The WFH works with dedicated volunteers from across the globe to produce educational content all of which is freely available on our eLearning site. This is possible only with the support of our partners. Without them, none of these important resources would exist. Stand with our many volunteers by donating in support of our mission today.