September is MPN Awareness Month. These four weeks are dedicated to a group of rare blood cancers called myeloproliferative neoplasms (MPN) and meant to put an emphasis on the challenges faced by patients affected. The Austrian pharmaceutical company AOP Orphan Pharmaceuticals GmbH (AOP Health), specializing in the research and development of therapies for rare diseases, presents its new 5-part podcast series in German language: "Ab jetzt ist alles anders? Leben nach und mit einer schwerwiegenden Diagnose.“ ("Will everything be different now? Life after and with a serious diagnosis.")
For most patients, receiving the news of having a serious illness is an unexpected bombshell in their lives. Their daily routine gets out of hand, and they find themselves in a new, unfamiliar reality. Newly diagnosed patients often feel alone and helpless, not knowing how to process this information. With its new podcast series, AOP Health wants to directly address these people and support them in navigating this unknown situation.
Focus on coping strategies
It is usually a bundle of measures that help those affected to deal with their diagnosis and the disease. At the heart of the AOP Health podcast series are therefore mental coping strategies, as patients often shy away from accepting psychological support after receiving the news that they are chronically and severely ill. Two of the reasons are that they do not want to deal with their mental health on top of their physical illness or they do not know how to best access psychological counselling offers. However, psychological support can significantly contribute to a positive treatment outcome.
In this podcast produced in cooperation with the Viennese agency sisigrant, experienced psychologists talk about dealing with big feelings, relative’s difficulties, and measures those affected can take to better cope with their situation.
Patients share their experiences
In addition, long-term patients suffering from MPN share their fears and concerns, how they deal with them, what has changed since their diagnosis, and how they have found their way back to normal life.
“I did not tell my children about it for half a year because I did not want to burden them. In retrospect, I would do it differently," says one patient in the podcast, for example.
This exchange is intended to support patients and their loved ones in finding their own path within this new reality, because these shared experiences can be of help when trying to live as normal a life as possible despite the serious illness.
AOP Health shining a light on patients
AOP Health’s driving force is to find solutions to patients' health problems. In addition to its core task of researching and developing therapies, the company also designs support services for those affected. Last year, AOP Health published a checklist for patients to prepare for the conversation with their doctor as well as seven tips for dealing with a rare disease. Both were conceptualized together with the Global MPN Scientific Foundation (GMPNSF) and Professor Dr. Haifa Kathrin Al-Ali, specialist in internal medicine at the University Hospital Halle (Saale) and director of the Krukenberg Cancer Center Halle. With the launch of the podcast series, AOP Health is adding another easy-to-understand component to its contents for patients.
Sophie Rappold, who is responsible for global product management and patient affairs in the hemato-oncology therapy area at AOP Health, explains:
We want to support patients in processing their diagnosis. The psychological effects should not be underestimated.
Sophie Rappold
International Product Manager HematoOncology
Links
You can listen to the podcast "Ab jetzt ist alles anders? Leben nach und mit einer schwerwiegenden Diagnose." ("Will everything be different now? Life after and with a serious diagnosis.") or choose your favorite podcast channel here.
A checklist to prepare for the conversation with your doctor can be found here, and the seven tips for dealing with a rare disease here.
Source & Image Credit: AOP Health
