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Three children with a rare disease admitted to PIMS for evaluation

ISLAMABAD: Preparations to treat the children with a sporadic disease, in which they wake up active and are paralysed by sundown every day, have been confirmed by the Pakistan Institute of Medical Sciences (PIMS).

A nine member board has also been designed to conduct tests, samples of which may also be sent to the United States for analysis.

Doctors believe that the three children, all from the same family, may be suffering from a hereditary disease called Masthenia Syndrome, or MS for short, which is an unusual illness with 600 cases reported all over the world so far.

The siblings have been named as 14-year-old Shoaib Hashim, nine-year-old Rasheed Hashim and Ilyas Hashim who is just a year old. Because they only remain active during the day, villagers have named the children ‘solar kids’.

Molecular Biologist Prof Dr Riazuddin said he thought the three children were suffering from MS.

“This disease makes the nerves weak because of which a patient wakes up normal, but within a few hours, the nerves become so fatigued that the patient becomes paralysed. It is all because of a disturbance in the neurological system,” he explained.

He said that MS is a very rare disease with an incidence rate of one in 2.5 million families. He said that of the 600 reported cases, most have been from Europe and North Africa.

“This is the first reported case in Pakistan, which is why we are giving so much attention to it,” he said.

“I think the parents would have one MS gene each, which is why they are not affected by MS though they are carriers. But their children are affected because they now have two MS genes, one from either parent,” he said.

The doctor said that the parents are cousins, which means the MS gene runs in the family, but he accelerated to add that MS is not caused by marriages between cousins and that incidences occur only if two MS carriers reproduce.

“Right now, only the two older siblings are affected by the disease, and the one-year-old is not yet showing symptoms, but it is only a matter of time before he also faces problems”, he added.

PIMS Vice Chancellor Dr Javed Akram said that it was decided to move the children to PIMS because the hospital has experience in working on genetic diseases.

“The boys’ father is a farmer and he cannot afford expensive treatments and travelling, so it was decided that PIMS will bear all the costs and after treatment and family profiling, a research study will be carried out, the findings of which will be shared with other hospitals and other medical institutions,” he said.

 “In the past, infectious diseases were more focused on, but in the future, genetic diseases will be given more attention due to which we will know at what age a patient will begin showing symptoms if he has a genetic disease. This is called neonatal screening,” he added.

The medical board created for the ‘solar kids’ includes Dr Javed Akram, Prof Dr Moazzam Nazeer Tarar, Prof Dr S. Riazuddin, Prof Dr Tayyab Husnain, Dr Muhammad Asif Naeem, Dr Muhammad Rauf Ahmad, Dr Mohsin Shahzad and Dr Zaman Khan.

 

The news originally appeared in The Dawn News
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