The Diabetes Unit at KEM Hospital, Pune, has recently launched a dedicated support group for helping patients with Wolfram Syndrome, a rare genetic disorder that primarily affects children with insulin-dependent diabetes. This condition is characterized by symptoms such as vision loss, hearing impairment, excessive urination, and neurological degeneration. Genetic testing confirms the diagnosis. The hospital currently cares for 18 patients diagnosed with Wolfram Syndrome.
Due to the rarity of the condition, families frequently face challenges in accessing adequate information, resources, and emotional support.
Recognizing these challenges, the Diabetes Unit at KEM Hospital Research Centre has established the Wolfram Syndrome Support Group. This initiative aims to create a robust network of support, provide resources, and encourage research to improve the quality of life for individuals affected by this condition.
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Wolfram Syndrome Support Group recent meet held
The inaugural meeting of the Wolfram Syndrome Support Group was recently held at the hospital, bringing together families, healthcare professionals, and advocates to discuss collaborative strategies for managing the condition.
A multidisciplinary team of experts, including Pediatric Diabetologist Dr. Kalpana Jog, Diabetologists Dr. C.S. Yajnik and Dr. Smita Dhadge, Geneticist Dr. Chaitanya Datar, Urologist Dr. Yogesh Sovani, Senior Ophthalmic Surgeon Dr. Udayan Dixit, Optometrist Ms. Rahima Patel (HV Desai Eye Hospital), and Counselors from KEM Hospital and Juvenile Diabetes Foundation attended the meeting. These specialists interacted with patients and their families, offering insights and guidance.
The meeting provided a much-needed platform for individuals affected by Wolfram Syndrome and their families to connect, share experiences, and access expert advice.
