Two-day 'ICON-2016' moot concludes: experts seek government's support for children suffering from LSD
Experts underscored need for diseases' awareness and availability of proper health services with a vision to ensure quality healthcare in the country. The two-day 'ICON-2016' conference concluded on Sunday was organised by Indus Hospital. The event saw an overwhelming participation of doctors, and experts who took part in various discussion groups throughout the event.
Experts observed with concern that LSD was no more "Rare" in the country and that its incidence was increasing with every passing day.
"Unfortunately despite increase in the incidence of LCD we continue to remain exposed to challenges that were faced when it used to be a rare ailment," said Dr Muhammad Fareeduddin, Head of Paediatric department at Indus Hospital.
Senior child specialists of the country said major support is needed to set up facilities for screening; early and accurate diagnosis; appropriate enzyme therapy and rehabilitation making the patients' lives comfortable.
They demanded that as this disease (LSD) is manageable and the treatment is also available in our country, the governments, both at federal and provincial levels should come forward and provide free treatment to the children in need.
Replying to a question Dr Fareeduddin said, "We are aware about the deaths due to LSDs during last year. The actual number of such deaths could be much more but unknown due to the absence of LSD diagnosis facilities. We have 13 under-treatment patients in our country".
Dr Fareeduddin said, "Awareness and the availability of proper health services vary extensively in different regions of the country. Metropolitan cities are still doing well, as awareness is present. Expecting parents should be suggested prenatal diagnosis in order to prevent the recurrence of the disease."
"Selfless work is quite effective in resolving issues of any society. Indus Hospital is included in a few health facilities in the country which offers free treatment for patients," he said.
"Pakistani people are much generous in philanthropic contributions. I have come to know that Rs 554 billion is being donated yearly in Pakistan," he added.
Dr Muhammad Fareeduddin said, "There are over 40 types of LSDs and the estimated combined incidence of all Lysosomal storage disorders is about 1 in 5,000 live births. However the incidence of each of the different diseases can range from 1 in 40,000 up to 1 in 2,000,000.
In Pakistan, over 150 cases have been diagnosed in 2 years, which is not considered to be as rare as the global data. The reason could be the higher frequency of consanguineous marriages in many communities," he informed.
Currently, Indus Hospital, National Institute of Blood Diseases, National Institute of Child Health, Children Hospital Karachi, Children Hospital Multan, Nishter Hospital, Children Hospital Lahore, Lahore General Hospital, Military Hospital Rawalpindi, Shaheed Benazir Bhutto Hospital Islamabad in different cities of Pakistan are equipped with LSD diagnosis and treatment facilities, he concluded.
Professor (Dr) Syed Kamran Ahmad who was Chairman of ICON-2016 said some 2400 people attended various sessions of the conference. He said Indus Hospital is going to expand its health facilities as part of vision 2024.
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