Organization for Rare Diseases India (ORDI) has highlighted the importance of creating awareness on Mucopolysaccharidosis (MPS), which is a category of a rare disease.
MPS is a part of a group of liposomal storage disorder, which is caused by a deficiency of lysosomal storage enzymes. There are seven distinct clinical types of MPS, with multiple subtypes. The storage disease causes damage to several systems in the body. Being progressive in nature it leads to severe physical and sometimes, even cognitive limitations.
On the occasion of the International Day of Awareness for MPS, observed on May 15 highlighted the challenges faced by people with Mucopolysaccharidosis on a daily basis. It depended on multiple factors such as stage of diagnosis, the type of MPS, treatment options for the disease, economical status etc.
Patients with MPS are rare, because they did not have a choice. “Like each one of us, they want to lead a completely normal life. They want to be part of this society, despite their illness. It is inspiring how they strive for a better future. One such MPS patient, Lavanya who visits our RDCCC (Rare Disease Care Coordination Centre) every fortnightly for treatment, while managing her academic aspirations,” said Prasanna Shirol, co-founder and executive director, ORDI.
‘We are still far behind, when it comes to awareness on rare diseases, but the good side is that we are trying- and the day is not far away when ‘rare is no more rare’. Better awareness leads to a faster diagnosis of the disease, good treatment options, and a comparatively early stage of intervention, he added.
In Karnataka, MPS patients are supported by the government and via various charitable access programmes. However, to scale-up the ease of access in treatment at a national level can only be achieved if we have an optimum Rare Disease Policy. We are positive that progressive India will ensure in driving high end research and affordable treatments for the rare disease community, said Shirol.
ORDI which was incepted in 2014 is a patient centered non-profit organization with the mission to improve the a health of patients with rare diseases across India through awareness, advocacy, collaborations and information dissemination.
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