Of the 2 recorded cases of the disease in Mumbai, both patients and families disappeared during treatment
Of the 2 recorded cases of the disease in Mumbai, both patients and families disappeared during treatment
Even while makers of the film Paa insist that it isn't about the illness, doctors who have had the very rare chance of attending to progeria patients are hopeful it will help patients suffering from this debilitating condition.
Of the two recorded cases of progeria at Mumbai hospitals JJ and KEM both patients and their families vanished soon after the disease was diagnosed.
Associate professor Yogita Patil still remembers the day when a 13-year-old boy was brought into the anesthesiology department of KEM Hospital in 2007.
"He had nine teeth, wrinkled skin and his hair was falling out in clumps.
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"The anesthesiologist in Nashik, where the family came from, didn't even want to touch the child. There's too little known about the condition," said Patil.
Patna family
Six children of the much-documented Khatoon family in Patna who were all diagnosed with the condition, are being taken care of by the S B Devi Charity Home.
Others haven't been as lucky. "The Nashik family was uneducated, but had accepted their child.
They also told us that they had another son back in the village with the same enlarged head.
We suspected that both children might have had progeria, but we did not hear from them again," said Patil.
Going to a Baba
Dr Amar Surjushe, associate professor of dermatology at Shri Vasantrao Naik Govern-ment College in Yavatmal, went one step further.
After having treated a two-year-old child, who was suffering from progeria, at J J Hospital in 2005, he and the team had doggedly continued follow-ups for two years.
"They then vanished. They used to talk about a baba.
I'm afraid that's where they might have gone. They could have improved the quality of the baby's life by continuing treatment at the hospital.
We even sent people personally to look for them in the place they listed as their address, but there was no one there," said Surjushe.
The movie, the doctors hope, will bring about some understanding of the condition.
"It's good that big names are attached to the project. If anything, we might see more cases that we can sensitively manage in the years to come," said Patil.
What is Progeria?
It's a genetic condition where the signs of ageing are visible from a very early u00a0age. The term progeria is derived from the Greek word geras, meaning old age.
Very few cases are reported from India and 97 per cent of patients worldwide have been Caucasians.
The first case was detected in 1886. In patients, intelligence is normal, but sexual maturation is absent and sexual development retarded. The average life expectancy is 13 years, with an age range of u00a07-27 years.
The disease has very low incidence and occurs in one per 80 lakh births.
13
The average lifespan of children with progeria
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