On the occasion of International MPS Awareness Day, leading experts have emphasised on the need for creating an understanding regarding Mucopolysaccharidoses (MPS) as a rare disease. They have urged that there is an urgent need to raise awareness about the disorder, its symptoms and the importance of timely diagnosis and treatment.
“Mucopolysaccharidoses (MPS) is one of the most common LSDs and is an acute condition wherein the body is unable to produce a specific type of enzyme. This absence of enzymes results in preventing cells from recycling waste which ultimately leads to materials getting stored in the body cells. The disease leaves the patients unable to do even simple daily tasks. With the progression of the disease, the condition of the patient deteriorates as damage s caused throughout the body including the joints, bones, heart and respiratory system. There are different types of MPS- I, II, III, IV, V, VI & VII. There is a need to raise awareness about the disease and its various aspects including symptoms, diagnosis and the treatment available” explained Dr. Ashok Gupta, Superintendent, JK Lon Hospital.
Further adding, Dr. Lalit Bharadia, Pediatric Gastroenterologist, SantokbaDurlabhjiMemoral Hospital (SDMH) said, “MPS is a life-threatening condition if it is not treated on time. Therefore, it is important that the symptoms are recognised on time and that the patients receive the treatment. Enzyme Replacement Therapy (ERT), the treatment available for MPS has proved to be effective and have had a positive impact on the life of a patient. It is necessary to implement the right interventions to ensure that the patients receive treatment so that they do not lead debilitating lives. We have patients who have received treatment and have immensely benefitted from it. Efforts need to be made so that the rest of the patients do not suffer and are able to get immediate relief.”
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 the positive stories.