Mystery of Pakistan's "solar kids" baffles doctors

[Dubious]

There are few who wait as wistfully for the sun as Shoaib, Rashid and Ilyas — three children hailing from a Balochistan village which is stunned by their mysterious illness.

Residents of Mian Kundi, a village some 15 kilometres from Quetta, the children aged one, nine and 13 are forced into stillness when it sets, and anxiously wait for it to come up again the next day.

At 4am, they rise with the first rays, filled with energy and life. As the sun travels west, their strength appears to deplete, and by the time it sets, they are completely paralysed.

According to the Pakistan Institute of Medical Sciences (Pims) Chancellor Dr Javed Akram, theirs is the first reported case of such an illness across the world. “It is a challenging puzzle for medical science to solve,” Akram says: bodies synced to the movement of the sun.

Also read: Pims to take in three children suffering from rare disease

The naming
Hashim, a security guard at IT University Quetta, says his sons were born like this. It wasn’t an anomaly or habit formed later in life; from the very first day, he says their bodies appeared to be dependent on sunlight. When villagers heard about them, they were amazed, and they were christened ‘solar kids’.

But not all of his kids have earned that title. Hashim, who married his first cousin, have three more children -- two girls and a boy -- who have escaped the peculiar condition.

He says his town is disease-free, and all basic modern facilities like electricity, phone and gas are available. People live a healthy, normal life, as most places in the country. “We are not a backward village,” he clarifies, lest people attribute the roots of the disease back to his hometown.

They rise with the first rays, filled with energy and life. As the sun travels west, their strength appears to deplete.

When one observes them closely, the boys' daily activities appear normal. The children wake up early, sometimes before sunrise, and are energetic.

After attending classes at a seminary, they play cricket with their friends and spend time with their siblings. When they can, they help their father out with his part-time livestock farming, tending to the sheep and goats.

“They don’t really complain,” Hashim says, “They enjoy doing everything they are told to.”

13-year-old Shoaib, nine-year-old Abdul Rashid were born with their movements synced to the sun. —Photo by the author

The older two are particularly keen about their studies and idolise their teacher 'Maulvi Sahab'. Shoaib wants to excel in religious studies and Rashid wants to become a Hafiz-e-Quran.

But despite the ordinariness of they daytime routine, they live with a constant nagging that their time is limited till late afternoon. As the sunlight fades, the three boys seem to grow lazy. By the time the sun disappears, their energies are totally drained.

No textbook solutions
Akram claims he has never heard of the condition. “It is a peculiar disease which pushes children into a vegetative state after sunset,” he explains. “We have taken it up as a research project.”

Also read: 232 tests recommended for ‘solar kids’

His team is working with a team of 27 Pakistanis and 13 international members to solve the case. He hopes to treat the mysterious illness, but first, they have to make a successful diagnosis.

Pims has already sent blood samples and test reports to thirteen international collaborators, including Mayo Clinic and John Hopkins Medical Institute in the US, and Guys Hospital in London. Hundreds of tests have been carried out, but to no avail.

We are lucky their illness has not worsened with time.
Hashim, the children's father

Meanwhile, a team is busy in Mian Kundi village, gathering environmental samples from sand and water.

Hashim is aware of the efforts underway to cure his sons, and considers them fortunate. “We’re lucky their illness has not worsened with time,” he notes. He adds that the boys are frustrated with their physical limitations. It is a strange thing for a father to watch.

Around sunset, the boys start to lose their energy and retreat to their beds. —Photo by the author

“They know it will happen,” Hashim says, "So they keep an eye on the sun’s movements. Their bodies and mind have been trained to complete their tasks in time for bed at sunset."

At times, Hashim feels their activity is more 'time-bound' than 'sunlight-bound'. “In the case of thick clouds or rain, their routine doesn’t change,” Hashim explains. “Often,whether the sun is visible or not, they start shutting down in the evening.”

https://www.dawn.com/news/1256214/r...h-the-sun-pakistans-solar-kids-puzzle-doctors

Now that is INTERESTING! Our doctors are looking into it the smae doctors who NS thought couldnt look into his "special" check ups..

Sorry for the taunt but cant help such selfish behaviour deserves no shabash from me!


Sounds like plants
@Manticore @Emmie @Gufi @chauvunist

 

[Dubious]

Pims to take in three children suffering from rare disease

IKRAM JUNAIDI — UPDATED APR 28, 2016 10:43AM

ISLAMABAD: Arrangements to treat the children with a rare disease, in which they wake up active and are paralysed by sunset every day, have been finalised by the Pakistan Institute of Medical Sciences (Pims).

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

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

‘Solar kids’ who wake up active, are paralysed by evening may be suffering from a disease with only 600 reported cases worldwide
Last week, the case of three children of the same family in a village near Khuzdar in Balochistan came to light when they were reported to wake up active in the morning but were said to lose energy as the day progressed and end up paralysed by sunset, with the cycle repeating every day.

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’.

Since Pims is researching into genetic diseases, and with this being the first reported case in Pakistan, it was decided to move the children to Pims. Shoaib and Rasheed have been moved to a Pims Satellite Lab in Lahore and all the siblings will be moved to Islamabad on Saturday.

Family members accompanying the children will be staying at the Mehman Khana and their boarding expenses will be borne by Pims while three beds have been reserved for the brothers at the Children Hospital.

Talking to Dawn, 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 occurrence 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 hastened to add that MS is not caused by marriages between cousins and that occurrences occur only if two MS carriers reproduce. He said that screening for genetic diseases is important before marriages between cousins.

“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.

Tests for nerve strength will also be carried out now, along with others in order to confirm MS and how far it has progressed, he said.

Pims Vice Chancellor Dr Javed Akram told Dawn 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.

The vice chancellor suggested that the government should mandate the medical screening of every child after birth, much like the Sindh government has.

“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 constituted 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.

Published in Dawn, April 28th, 2016

https://www.dawn.com/news/1254919

232 tests recommended for ‘solar kids’

A REPORTER — PUBLISHED MAY 01, 2016 07:00AM

ISLAMABAD: A medical board consisting of 19 health experts on Saturday examined children who have been named ‘solar kids’, and as many as 232 tests and DNA analyses have been recommended for them. The board members have anticipated that the testing could reveal the an entirely new disease.

Last week, siblings from Balochistan were nicknamed ‘solar kids’ by fellow villagers after they were found to be waking up early in the morning full of energy, which would deplete over the course of the day and leave them totally paralysed by sunset.

Pims Vice Chancellor Dr Javed Akram, who chaired the medical board at the Pims Satellite Lab in Lahore, told Dawn that all the 19 doctors on the board were puzzled by the case, having never encountered anything like it before.

“It was decided that five tests regarding DNA analysis will be held from the UK and US to seek a second opinion and confirm the name of the disease,” he said.

In response to a question, Dr Akram said a team was being sent to Balochistan to collect blood samples from the children’s family members, and samples from Ilyas Hashim, the third sibling, who is still in the village.

“The team will also collect environmental samples, such as soil, water and air, because those should also be checked to see if there is something wrong with the environment. If it is a new disease, there is the fear that is can spread quickly so all kinds of precautionary measures should be taken,” he added.

Published in Dawn, May 1st, 2016

https://www.dawn.com/news/1255591

 

[RazorMC]

Never heard of this until today. It is intriguing and sad at the same time.

I noticed the article says that the parents are cousins.

 

[AZADPAKISTAN2009]

- Interesting -

Perhaps they should install UV lamps in home to see if that helps
There must be some sort of cellular break down taking place with absence of Sun light

 

[Hamza913]

Never heard of this until today. It is intriguing and sad at the same time.

I noticed the article says that the parents are cousins.

I doubt that would be the main cause of this issue.

 

[risingsinga]

That's really interesting and unique case. I did not study any such case before. It seems to be genetic but it will take some serious research to find the gene and other factors.

 

[The Sandman]

It's really sad but at the same time it's really really interesting or weird don't know what to say.

 

[FalconsForPeace]

The two brothers have come to be known as the "solar kids" and their case has completely mystified Pakistani doctors.

Aged nine and 13, the boys are normal active children during the day. But once the sun goes down, they both lapse into a vegetative state -- unable to move or talk. Javed Akram, a professor of medicine at the Pakistan Institute of Medical Sciences, told The Associated Press on Thursday that he had no idea what was causing the symptoms.

"We took this case as a challenge. Our doctors are doing medical tests to determine why these kids remain active in the day but cannot open their eyes, why they cannot talk or eat when sun goes down," he said, as he visited the pair at his hospital.

Akram said the government was providing free medical care to the siblings, who come from an impoverished family.

The brothers are undergoing extensive medical testing in the capital, Islamabad, and samples of their blood have been sent to overseas specialists for further examination, he said. Researchers are also collecting soil and air samples from the family's home village.

Mohammad Hashim, the father of the two brothers, comes from a village near Quetta, the capital of southwestern Baluchistan province. He and his wife are first cousins and two of their six children died at an early age. Their other two children have not displayed any unusual symptoms.

His simple theory: "I think my sons get energy from sun."

But doctors have already dismissed the idea that sunlight plays a role, noting that the boys can move during the day even when kept in a dark room or during a rainstorm.

During the day, 13-year old Shoaib Ahmed and his brother Abdul Rasheed did indeed seem normally active, energetic and cheerful as they emerged from their hospital room on Friday and walked to a nearby canteen to have tea.

"I will become a teacher," Shoaib Ahmed told the AP, while his younger brother said he wants to be an Islamic scholar.

http://www.cbsnews.com/news/pakista...ry-doctors-baffled-brothers-vegetative-night/

 

[Jlaw]

Solar Powered [Perk]

Solar Powered is a perk in Fallout 4. Gains Strength and Edurance in daytime and Regenerates Hit Points when in direct sunlight.

Ranks

• Rank 1: Catch some rays! Gain +2 to Strength and Edurance between the hours of 6:00a.m. and 6:00p.m.
• Rank 2: Sunlight slowly heals your radiation damage. (Requirement: Level 27)
• Rank 3: Sunlight slowly regenerates your lost Health. (Requirement: Level 50)

Notes
Whenever you are outside and in direct sunlight, your Hit Points will regenerate at a progressively faster rate depending on your current rank. This healing process will reduce but not remove the need for using stimpaks. In addition to this, being in direct sunlight also charges up a special solar ability that can be used to completely restore all health. This effect can be accessed at any time, even at night or when underground or away from the sun, and will heal in direct proportion to the amount of charge stored. The effect is activated either from the status menu, or by adding it to your favorites. Note that the regeneration ability does not affect limb damage, although the restoration ability will fully replenish all Hit Points and will fully heal all limbs. Be careful when using the restoration ability at rank 4, as any living, synthetic, or robotic entities caught within the blast radius will be set on fire, including neutral and friendly NPCs, as well as companions.

 

[T-72M1]

reverse vampire syndrome, children of the light

 

[Talwar e Pakistan]

Send them to India; they would be worshiped there.

 

[Thəorətic Muslim]

I've never paid attention in biology class, but isn't there some mechanism in your body that shuts it down once you go to sleep? People who have a tendency to sleepwalk and what not have a deficiency in that.

A lot of mammals have it.

 

[shah1398]

May be it has got something to do with sudden Vitamin D and Calcium deficiency at sunset as these play a major role in body movements and are integral part of blood chemistry. These should be some change in blood/urine/stool samples esp ABGs (Acid Base Gases) during day time and after sunset.

 

[Dubious]

I noticed the article says that the parents are cousins.

I actually found the articles contradicting each other:

But not all of his kids have earned that title. Hashim, who married his first, have three more children -- two girls and a boy -- who have escaped the peculiar condition.

The doctor said that the parents are cousins

I doubt that would be the main cause of this issue.

Yes doctors clarified that....

If it is MS....as initially speculated by the doctors then ANY human being being a carrier married to ANY other carrier would have such kids! The chances 2 cousins BOTH being could be coincidence unless even their parents were like 2 siblings married to 2 siblings thing...

Send them to India; they would be worshiped there.

Not something worth joking about! Just imagine someone said that to your children!

I've never paid attention in biology class, but isn't there some mechanism in your body that shuts it down once you go to sleep? People who have a tendency to sleepwalk and what not have a deficiency in that.

A lot of mammals have it.

Your body never fully shuts down when you are asleep...If it did you would be dead

Involuntary reflexes still work like hearth pumping, diaphragm raising and falling with your lungs and so on...

Not much is known about sleep walking still: http://www.dailymail.co.uk/health/article-1354800/Sleepwalking-linked-genetic-defect.html

May be it has got something to do with sudden Vitamin D and Calcium deficiency at sunset as these play a major role in body movements and are integral part of blood chemistry. These should be some change in blood/urine/stool samples esp ABGs (Acid Base Gases) during day time and after sunset.

Please read the articles carefully...It says even when it is cloudy the children still manage to be active during the day!!

I am not sure how many out of the 230 plus tests concentrated on urine....and if it were the case at least 1 of the 230 tests would have shown....right?

 

[shah1398]

Please read the articles carefully...It says even when it is cloudy the children still manage to be active during the day!!

I am not sure how many out of the 230 plus tests concentrated on urine....and if it were the case at least 1 of the 230 tests would have shown....right?

Sir we know that presence of clouds do not stop the rays of the sun totally. As days are longer in summers n shorter in winter and the news specifically link these kids energy with the sun, then surely its got something to do with the sun. And yes they would have conducted numerous tests but the news has not touched upon that part. If all the tests during day n night time are more or less the same then its surely a mystery.