Meet to spread LSD disorder awareness

It's a genetic disorder and only five of its sub-disorders are curable. But the cure comes at a price which is as high as Rs2 lakh, and for an indefinite period. Owing to these reasons, the Lysosomal Storage Disorder (LSD) Support Society is organising an awareness and support programme in Mumbai this year.

Explaining LSD and its related problems, Dr Jayesh Sheth from FRIGE said that, “The aim is to create a strong national support group. The expenses for the enzyme replacement therapy which is provided to cure patients of LSD is quite high and although the world over government support is provided in terms of funds, the same is absent in India and that is why an awareness and support group is required.”

Dr Sheth specified that LSD diseases namely, Gaucher, Hurler, Hunter, Fabry and Pompe are currently observed in patients in India. He continued, “While early identification in a child of young age is better in terms of treatment as the neurons are not yet fully developed, late detection leads to lesser chance of complete cure for this child. In the case of early detection, nearly 95% cases get completely cured.”

Dr Sheth says that while the ratio of babies born with LSD disorder now is 1:4000, when a cumulative figure is taken of the 23 million babies born annually, 8000 suffer from LSD disorder.
In addition, a survey was carried of the western nations in association with Indian Council of Medical Research and it was found that of the 874 children, 37% were suffering from LSD disorders.

Citing reasons, Dr Sheth informed, “Marriage within the same family lineage should be avoided which could in turn help reduce this issue.”