Permanent cure for life threatening disorder still to be found

Kolkata: Medical researchers across the globe might have found some cutting-edge cure to various deadly diseases posing threat to humanity, but success still eludes them when it comes to Lysosomal Storage Disorder (LSD), a life-threatening disorder which mostly affects children.

A rare genetic disorder among children caused by deficiency of certain enzymes, LSD still remains to be an ailment without a permanent cure.

"Though there is no permanent cure till today, only supportive care is available to the families of afflicted children," sources of Delhi-based NGO LSD Support Society say.

Preliminary symptoms of the disease include enlarged liver, spleen and stiffness of bones, deafness, blindness and even serious cardiac problems at a later stage, said Institute
of Child Health director Apurba Ghosh and state-run SSKM hospital`s consultant, Medical genetics, Kaushik Mondal.

In some cases, multiple organ failure can also occur, they said, adding that although only 16 children in West Bengal suffered from the disease, a proper diagnosis continues
to be the problem area.

Doctors say LSD is a group of 45 rare genetic disorders which occur due to the deficiency of specific enzymes in the cells that could attack any organ.

NGO sources said the LSD Society will campaign for early diagnosis and effective, affordable and safe therapies for LSD diseases.

"We will strive to provide information and support to all patients and their families," they said.

On the role of the government, they said they will try to convince the government to promote early and accurate diagnosis and screening programmes for the disease.

"The society will track worldwide the (ongoing) research into the causes, treatment and management of the disease," they said.