Around a month after a Division Bench of the Kerala High Court called for raising funds for the treatment of children suffering from rare diseases, an enzyme replacement therapy for Pompe disease has begun at the Government Medical College Hospital, Kozhikode.
According to sources, a two-year-old child from Kannur attended the first session of the therapy on September 11. Another child from Mannarkkad in Palakkad will receive the treatment in mid-November. She is right now undergoing another bridge therapy at a private hospital in Kochi. Medical college sources claimed that this is for the first time a government hospital is offering this treatment.
Rare diseases
Life-threatening diseases which afflicts only 100 in a lakh population is called a rare disease. Primary immune deficiency disorders, inborn errors of metabolism and Lysosomal Storage Disorders (LSD) such as Pompe disease and Gaucher disease are some of the rare diseases reported in Kerala.
People with LSD will have enzyme deficiencies, which affect the functioning of lysosome, the structure in cells that breaks down proteins, carbohydrates and old cell parts to help the body recycle them. This leads to an abnormal build-up of toxic materials in the cells. Treatment, however, is available only for some of them and the cost is very high.
The bench led by Chief Justice S. Manikumar intervened in the issue following a petition filed by the Kerala chapter of the Lysosomal Storage Disorders Support Society. The Central government allocated ₹1.5 crore, the State government ₹50 lakh and the Kerala High Court Advocates’ Association pooled in ₹5 lakh.
Manoj Manghat, functionary of the society, said that the therapy would have to be done every fortnight. The State government allocated the fund through the Kerala Social Security Mission.