KEM Hospital Pune Launches Support Group For Rare Genetic Disorder Wolfram Syndrome
KEM Hospital Pune Launches Support Group For Rare Genetic Disorder Wolfram Syndrome
In a groundbreaking initiative, the Diabetes Unit at Pune’s KEM Hospital has launched a dedicated support group for patients with Wolfram Syndrome, a rare genetic disorder that primarily affects children with insulin-dependent diabetes.
Wolfram Syndrome is characterized by symptoms such as vision loss, hearing impairment, excessive urination, and neurological degeneration. With only 18 patients diagnosed with the condition currently under the hospital’s care, the support group 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.
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 diabetologists, diabetologists, geneticists, urologists, ophthalmic surgeons, and counsellors, interacted with patients and their families, offering insights and guidance.
“The support group is a much-needed platform for individuals affected by Wolfram Syndrome and their families to connect, share experiences, and access expert advice,” said Dr. Kalpana Jog, Pediatric Diabetologist at KEM Hospital while speaking to the media person. “We aim to provide comprehensive care and support to our patients and their families, and this initiative is a significant step in that direction.”
The Wolfram Syndrome Support Group is a testament to KEM Hospital’s commitment to providing holistic care to patients with rare and complex conditions. As the support group continues to grow and evolve, it is expected to make a significant impact on the lives of individuals affected by Wolfram Syndrome and their families.
