Patient Ambassador Maria Nassif participated in the 4th edition of HealthTech for Patients event on May 16, 2024, hosted by HealthTech for Care. She shared her journey with HoFH, highlighting mental health challenges and daily struggles of living with a chronic illness.
Maria emphasized the need for early diagnosis, personalized treatment, universal access to care, effective communication with healthcare professionals, psychological support, and a strong patient community. Her participation underscores FH Europe Foundation's commitment to raising awareness and advocating for comprehensive patient care.
On 16 May 2024, I participated in the 4th edition of Health Tech for Patients organized by Health Tech for Care as FH Europe Foundation Patient Ambassador. I took part in the first round table which tackled the impact of illness on mental health: from screening to post-treatment. As a HoFH patient, I have talked about my journey with this rare disease from diagnosis until today. Having a chronic disease has affected my self-image and physical ability. The symptoms that I feel daily (i.e. racing heartbeat, tightness of chest and constant fatigue) make me wonder whether I am having a heart attack or stress especially since I underwent a double bypass open heart surgery at 24 years old. This constant fear put me in a freeze-or-flight state causing me panic attacks and depressive episodes. Our disease affects every aspect of our life (food diet, activities, outings, social life) and our future (choosing a partner, having a baby, work activity …). It takes a huge mental effort to balance between our lifestyle and our commitment towards our well-being.
Sharing my story on a global level and being the patients’ voice is very important to me. It helps bring more awareness about HoFH since it’s a silent disease and its symptoms are not visible on the outside. The most crucial part of my talk was the conclusion where I listed what we, as patients, need to be put in place to help us alleviate the burden of having a chronic disease and its effects on our mental health which included:
About HealthTech for Patients
HealthTech for Patients (HTFP) serves as a platform for patients to express their needs and discover innovations in healthcare by reuniting health innovation stakeholders. Organised by HealthTech For Care, the event aims to bridge the gap between healthcare professionals and patients, establishing an open exchange platform that enables professionals to better understand the perspectives, needs, and experiences of patients. The event brings together all the players involved in the medical innovation value chain, which enables better coordination within the European health ecosystem to accelerate the deployment of innovative solutions for all patients.