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 (SMGS) Hospital.
The aim was to raise awareness about rare diseases, specifically LSDs, and its different aspects and to support the rare diseases community at large. The event was also a platform for bringing the attention of the State Government on the necessity of addressing the treatment needs of the patients.
Dr Rekha Harish, HoD Paediatrics, was the chief guest on the occasion. 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) were present at the event.
“Although uncommon, the number of patients suffering from such disorders is large considering the population of the country. It, thus, 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 the various aspects of this health issue. Further, there is also a need to highlight the various challenges that the patients face and how treatment can have a positive impact on a patient’s life, especially in the case of LSDs”, said Rajendra Tyagi (Treasurer, LSDSS).
Commenting on the necessity of providing treatment, Dr Seema Thakur said, “The patients suffering from LSDs often lead severely debilitating lives and are not able to do even simple daily tasks. Further, the majority of the patients suffering from LSDs are children, which makes the situation more serious. The treatment- Enzyme Replacement Therapy- available for some LSDs is effective and has had a positive impact on the life of a patient.”