STATE TIMES NEWS
JAMMU: To raise awareness about rare diseases, specifically LSDs, and its different aspects and to support the rare diseases community at large, Lysosomal Storage Disorders Support Society (LSDSS), a patient group association for Lysosomal Storage Disorders (LSDs), on Tuesday organised a rare disease awareness event Sri Maharaja Gulab Singh Hospital, here.
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.
Patients from Jammu and Kashmir suffering from LSDs and eminent doctors from the hospital and Government Medical College (GMC) and Dr. Seema Thakur (Genetics and Fetal Medicine, Fortis Hospital, Delhi) were present at the event.
Moreover, Dr. Rekha Harish HoD Paediatrics, was the Chief Guest.
“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 make 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 delay 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.”
Lysosomal Storage Disorders (LSDs) are a group of around 50 inherited disorders which occur due to defects in the lysosomal function.
Lysosomes are basically enzymes in cells which are responsible for digesting large molecules thereby passing the smaller remains to other parts of the cells for recycling.
Explaining further, Dr. Thakur said, “Lysosomes are enzymes performing a critical function in the body. Even if one of these enzymes are dysfunctional, it might end up causing LSDs. Till now treatment is available only for a few of the LSDs- Pompe, Fabry, Gaucher, MPS (type I, II, III, IV & VI)- and has proven to be very effective. An event of this sort is a very good way of bringing focus to this aspect.”
The event was also a platform for the patients to discuss their individual challenges and journey. It served as an opportunity for them wherein they were able to draw inspiration from each other’s struggles and positive stories.
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