Media Release
Udupi, Feb 27: In recognition of Rare Disease Day, the Department of Medical Genetics at Kasturba Medical College and Hospital, Manipal, hosted a special event on February 27 to raise awareness about the challenges faced by individuals living with rare diseases. The global observance of Rare Disease Day takes place every year on February 28, with the theme for 2025 being “More Than You Can Imagine: An Anthology of Rare Experiences.” This day serves as a global call to increase awareness and support for those affected by rare diseases.
The event in Manipal focused on the theme "More Than You Can Imagine" and featured a thought-provoking street play aimed at educating the public. The play was performed at five prominent locations, including Kasturba Hospital Manipal, Koosamma Shambhu Shetty Memorial Haji Abdullah Mother and Child Hospital, Udupi, District Hospital Ajjarkad, Udupi, Dr. TMA Pai Hospital, Udupi, and Tiger Circle, Manipal.
The street play, which captivated the attention of public, was performed in three acts. The performance began with the rhythmic beat of drums and the clarion calls of Bidhi Nataka, setting a compelling stage for a vibrant and engaging awareness campaign.
Act 1: Understanding the risks of consanguineous marriages
The first act focused on raising awareness about the risks associated with consanguineous marriages, particularly between relatives. It highlighted how these unions could slightly increase the likelihood of genetic disorders, even if both parents appear healthy. The act also discussed the occurrence of genetic conditions that may emerge in a child for the first time, even when neither parent carries the responsible gene.
Act 2: Dispelling myths and addressing stigma
In the second act, the performance tackled common misconceptions about genetic disorders, such as the false belief that shared blood groups or poor-quality breast milk contribute to such conditions. The act also addressed the stigma that families of individuals with rare diseases often face, including unjust blame and misunderstanding. Through a lively and engaging performance, the play debunked myths, explained the true nature of genetic disorders, and showcased the resilience of affected families.
Act 3: The role of Medical Genetics in providing support
The final act emphasized the crucial role of the Department of Medical Genetics in offering genetic counseling, genetic testing, management, and prenatal diagnosis. It also highlighted the importance of genetic testing before planning a pregnancy and dispelled the misconception that genetic disorders are not treatable. The act stressed how genetic testing can provide valuable insights into the risks of recurrence and available reproductive options, helping families make informed decisions.
Dr Anju Shukla, head of the Department of Medical Genetics, commented on the event, saying, "The street play was a creative and impactful way to spread awareness about rare diseases and the essential role of genetic counselling and testing in supporting families. It encouraged the public to look beyond the surface and understand the complexities of genetic conditions, offering a glimpse into the challenges faced by those living with rare diseases."