Despite advancements in medicine, sometimes diagnosis eludes the physician. Cystinosis is one such genetic disorder which largely remains undetected. It is a rare condition in which the body accumulates excess amino acid cystine leading to formation of crystals that can damage cells.
Six children identified with this disorder in the state, may have a better chance of surviving the ordeal. There is now a ray of hope with regard to finding a cure for the disease.
On Wednesday, four of the children registered with Sapiens Health Foundation, that will provide them treatment, came together to launch the Cystinosis Chapter of India on Wednesday.
An important dignitary at the function was actor Rajinikanth. While the adults paid rich tributes to the actor, many of the children did not recognise him. The actor, dressed in a simple white shirt and jeans, posed for photographs with the children, all aged below 10 years, and hailing from various parts of the state.
The children are under the care of nephrologist Rajan Ravichandran, who says he stumbled upon the disease a year ago when he transplanted a kidney on a seven-year-old patient.
The drug to treat the disease costs Rs. 1 lakh per child for a six-month period. The drug is also available in the form of eye drops which are more expensive. The drug is in the process of being manufactured and is expected to be marketed in nine months.
The disease, though rare, is predominantly due to consanguineous marriages, Dr. Rajan said. All four children present at the programme were born of such marriages.
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