JAMMU, MAR 13: In the backdrop of Rare Disease Day, Lysosomal Storage Disorders Support Society (LSDSS), a patient-group Association for Lysosomal Storage Disorders (LSDs) organized a Rare Disease Awareness event in Jammu at Sri Maharaja Gulab Singh Hospital, with an aim to spread awareness about rare diseases, specifically LSDs, and its different aspects besides supporting rare diseases community at large.
The event was also a platform for bringing the attention of the State Government on the necessity of addressing treatment needs of patients. Dr Rekha Harish, HoD Pediatrics, was the Chief Guest on the occasion. The event was attended by a number of patients from Jammu & Kashmir suffering from LSDs and eminent doctors from the hospital and Government Medical College (GMC) and Dr Seema Thakur (Genetics & Fetal Medicine, Fortis Hospital Delhi).
“Although uncommon, the number of patients suffering from such disorders is large considering the population of country. It becomes important that rare diseases get their due recognition and that they are considered a public health challenge. The commemoration of Rare Disease Day, through this event, is the perfect occasion to highlight various aspects of this health issue. Further, there is also a dire need to highlight various challenges that patients face and how treatment can have a positive impact on a patient’s life, especially in case of LSDs,” said Rajendra Tyagi (Treasurer, LSDSS).
Commenting on the necessity of providing treatment, Dr Seema Thakur said, “Patients suffering from LSDs often lead severely debilitating lives and are not able to do even their daily tasks. Further, the majority of patients suffering from LSDs are children, which makes the situation more serious. This makes it crucial to ensure that the treatment can be made accessible, so that these children do not lose their lives due to delayed or no treatment. The treatment-Enzyme Replacement Therapy- available for some LSDs is effective and has had a positive impact on the life of a patient.”