Pak siblings cross the border to seek cure for rare disorder

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Old 22-Apr-2010
Pak siblings cross the border to seek cure for rare disorder

Mumbai: Hifsa Asif Ali travels to Mumbai every year from Karachi nursing a dream: to meet her Bollywood heart-throb Salman Khan.But the 12-year-olds time here is mainly spent in unending medical tests and clinical assessment of Wilsons disease,a genetic disorder that she and her siblings suffer from.

Hifsa wants to meet her Bollywood hero,but she will have to be content with touring Mumbai and shopping,especially for their medicines that are available at cheaper rates here, says their aunt,Sanam Noor.
Wilsons disease is a rare genetic disorder that causes copper accumulation in the brain,liver and other vital organs.This could lead to liver failure or long-term neurological problems.

Hifsas 20-year-old brother Athar was the first in the family to be diagnosed with Wilsons.He was brought to Mumbai in November,2004,in a near-paralysed condition.He couldnt stand or speak due to the copper accumulation in his brain, says Dr Aabha Nagral from Jaslok Hospital.Athar was mobile after months of rehabilitation but neurologist Pettarusp Wadia says certain neurological deficits are still there.His physical progress is amazing but his intellectual progress has been affected, Wadia adds.

After Athars diagnosis,Jaslok doctors recommended that his five siblings be also screened for Wilsons.We found that his sisters,Hifsa and Kulsum,also have it, says Noor.Kulsum,in fact,has a cirohottic liver but has been managing with drugs.
The biggest problem with the disorder is that in most cases,it cannot be diagnosed early.Dr Deepak Amrapurkar from Bombay Hospital said,Children with the disorder dont show any symptom till about five years of age as copper takes time to accumulate.So far,our hospital has seen about 100 children,but 20% died right at their first visit due to acute liver failure. According to Wadia,The best that can be done is that when a child is diagnosed with Wilsons disease,his\her siblings should also be checked.

Nagral underlined that early diagnosis could mean a life without transplant or neurological problems.If diagnosed early,patients can take medicines and lead normal lives.They can even have children, she said.
Consider Girgaum housewife Sanjeevani Patwardhan.I was 23 years old,when I first started vomiting blood.We visited many doctors over the next year before Wilsons disease could be detected.Till I was put on medication,I could not lift any object, said Patwardhan,who has been without any symptoms for the last 15 years.Now,all that I religiously do is take three tablets early in the morning and avoid certain copper-containing food.



Wilsons disease is an inherited disorder that causes too much copper to accumulate in the liver,brain and other organs Normally,copper is absorbed from food,and excess is excreted through bile.But in people with Wilsons disease,copper isnt eliminated properly and instead gets accumulated,possibly to a life-threatening level Left untreated,Wilsons disease can get fatal Symptoms include clumsiness,involuntary shaking,depression and difficulty in speaking,swallowing and walking

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