Hope and Science Hand in Hand in the Fight Against DMD: A Meaningful Gathering from the Rare Diseases Club

Adding another event to its awareness efforts on rare genetic diseases, the Üsküdar University Rare Diseases Club held the DMD Awareness Day Talk. At the event, held on the Zoom platform with 150 participants, the power of solidarity and hope in this process came to the fore as much as the challenges of living with DMD. Blending scientific data with real-life experiences, the program served as an important guide for the healthcare professionals of the future.

In one of the inspiring parts of the talk, Çağlar Özyiğit, a 37-year-old living with DMD, shared his personal life journey and his work as a civil society volunteer with participants. Describing his goal of one day founding a specialized hospital dedicated to DMD, Özyiğit emphasized that the disease is not an obstacle but a process that can be managed by acting together. Similarly, Emirhan Yalçın highlighted the importance of solidarity by illustrating the major difference that access to critical medical devices, made possible through proper guidance and family support, makes in quality of life.

The scientific perspective of the event was presented by PT Öznur Tunca, the first physiotherapist in Türkiye to complete a master's degree on DMD. Highlighting the importance of a multidisciplinary approach in DMD management, Tunca explained the critical role of early diagnosis and regular follow-up in preserving patients' mobility. In addition to practical information such as weight control, proper positioning and passive-active stretching exercises, she warned participants to avoid incorrect and experimental practices.

Throughout the talk, participants had the opportunity to learn about many specific topics, from choosing the right shoes to the contribution of swimming and play activities to flexibility. The fact that regular check-ups every three months and specialist follow-up extend life expectancy was illustrated through shared case experiences. This interactive platform not only provided theoretical knowledge but also contributed to the social visibility of individuals fighting DMD.

The event, which strongly conveyed the message "Hope is possible in living with DMD," ended with a call to act together to raise public awareness. Rare Diseases Club officials stated that they will continue to make a difference with projects that embrace scientific approaches and focus on human values. Aligned with Üsküdar University's "Science of Goodness" philosophy, this meaningful gathering was successfully completed with answers to participants' questions.