Ali Hussain Khan: Teenage boy with body of PENSIONER due to rare disease

August 27, 2013
PENSIONERAli Hussain Khan ages eight times faster every year from the condition, which has already killed his five brothers and sisters
Tragic Ali Hussain Khan looks like a wizened old man – yet he is only 14.
Heartbreakingly, he’s also the last surviving child of SIX siblings hit by a rare, crippling ¬and incurable disease.
But despite suffering such a terrible loss, brave Ali refuses to give up hope a miracle cure will be found so he will reach adulthood.
Ali was born with progeria, a ¬genetic condition that ages his body eight times faster than normal.
There are only 80 known cases of progeria on the entire planet.
Yet Ali, his two brothers and three of his sisters had the condition, which ¬usually kills victims by the age of 14 with a heart attack or pneumonia.
But Ali refuses to give up hope a miracle cure may be found, even though he knows his life could end any moment.
He told the Sunday People : “I very much want to live and I hope there is medicine for my disease out there.
“I’m not scared of death but my parents have suffered a lot.

“I’d love to live much longer for them. I don’t want to burden them with any more pain.”
Dad Nabi Hussain Khan, 50, and mum Razia, 46, from Bihar – the poorest state in India – are first ¬cousins who were the product of an arranged marriage 32 years ago.
When their first daughter Rehana was born in 1983 they had no idea anything was wrong.
It was only after her second birthday when she couldn’t eat or walk properly they visited a local doctor.
But he was baffled and sent them home with a useless medicine.
They went back to the doctor after their son Ikramul was born in 1987 showing the same symptoms – and got the same reaction.
Nabi, who earns £20 a month as a factory guard, said: “The doctors were as clueless as us.
“If one of them had told us our children had some kind of genetic problem and we were connected we’d have stopped having children.”
Daughters Gudiya and Rubina were born in 1989 and 1992, Ali arrived in 1999 and a newborn baby boy died. All had progeria.
But the couple also had unaffected children – Sanjeeda and her sister Chanda are now 20 and 10.
Nabi and Razia only found out about progeria in 1995 after seeing an expert – who told them it was ¬incurable.
Nabi said: “No one in our community ¬believed it.
“Neighbours and extended family tormented us for not getting help for the children – they just couldn’t ¬understand a disease with no cure.”
Meanwhile, life was unbearable for Rehana, Ikramul, Gudiya, Rubina and Ali as they grew up with progeria.
They were ridiculed and bullied till none of them went to school.
Ali, who weighs just 1st 8lbs and is 3ft 7in tall, said: “None of us has had a childhood because we were confined to home.
“We had each other but that was it – we had no life.”
He added: “I’d love to be a normal person who can play, go to school, do some sports, take some risks.”
Gudiya and Rubina both died in 2004 aged 15 and 12. Rehana died three years later aged 24.
But 22-year-old Ikramul’s death in 2009 hit Ali hardest.
He said: “Ikramul was my best friend. He was very strong and didn’t pay any attention to the bullies.
“When he died I cried for weeks and couldn’t eat. But I realised I’d do him a huge injustice if I crumbled.” He added: “I have no one now – but I have to stay strong.
“It’s very lonely living this life since my siblings have gone.
“I’d like to be in the company of others like me again.”
Ali is cared for by expert Dr Sekhar Chattopadyay, who said: “There is nothing similar in the world where five siblings are affected.
“Ali’s parents are related to each other and that could be the reason for the disorder, though they have two children who are normal.
“We’re trying our best to keep Ali mentally and physically fit.
“The average life expectancy is 13 to 15 but let’s hope we can prolong Ali’s to 24 like his brother.”
There are four known cases of progeria in the UK.
They include Birmingham-born Dean Andrews, 21, who is the ¬oldest survivor in Europe.

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Agencies
February 23,2020

Los Angeles, Feb 23: According to researchers, if administered quickly, a common medication that reduces bleeding could be a treatment for bleeding stroke.

The Spot Sign and Tranexamic Acid on Preventing ICH Growth - Australasia Trial (STOP-AUST) was a multicenter, prospective, randomized, double-blind, placebo-controlled, phase 2 clinical trial using the antifibrinolytic agent tranexamic acid in people with intracerebral hemorrhage (ICH).

ICH is a severe form of acute stroke with few treatment options.

Tranexamic acid is currently used to treat or prevent excessive blood loss from trauma, surgery, tooth removal, nosebleeds and heavy menstruation. For this study, one hundred patients with active brain bleeding were given either intravenous tranexamic acid or placebo within 4.5 hours of symptom onset.

Researchers analyzed brain CT scans taken during the 24-hour period after treatment with tranexamic acid or placebo.

Researchers found a trend towards reduced hemorrhage expansion in the group treated with tranexamic acid, especially in those treated within 3 hours of the brain bleed. However, this trend was not statistically significant. The finding was consistent with previous research using the medication.

"Further trials using tranexamic acid are ongoing and focusing on ultra-early treatment - within 2 hours. 

This is where the greatest opportunity for intervention appears to be. Tranexamic acid is inexpensive, safe and widely available. Our results and others provide great impetus for further, focused research using this treatment," Nawaf Yassi said.

Larger trials focused on patient outcomes are required for this therapy to enter routine clinical practice.

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News Network
May 11,2020

Panaji, May 11: Amid the COVID-19 outbreak, most of the people are more concerned about the health of their near and dear ones than their own well-being, says a study conducted by a leading business school in Goa.

People are now more conscious about any bodily changes, and even mild cold, cough and sneezing, it says.

The study, on public's reaction towards COVID-19 outbreak by gauging their psychological response in terms of anxiety and their coping behaviour, was conducted by the Goa Institute of Management's Dr Divya Singhal and Prof Padhmanabhan Vijayaraghavan.

It took into account inputs from 231 respondents residing in various parts of the country.

"Nearly 82.25 per cent of the respondents were more worried about the health of their loved ones than their own well-being," Singhal said.

"Majority of the respondents have become conscious of any bodily changes, sensations, a mild cold, cough, sneezing and experience concern, and attribute those changes to the symptoms of COVID-19," she said.

Besides, more than 50 per cent of the respondents said their social media usage has gone up as well as their time spent on watching movies and shows through online medium, the official said.

The respondents agreed that their technology usage to connect with friends and relatives has gone up, she said.

The study also indicated that a large group of respondents found it "depressing" to read forwarded messages on the deadly disease.

"An overwhelming majority of the respondentsagreed that they discourage unverified forwarded messages about COVID-19 on social media," says the study.

It also found that 41 per centof the respondents were not doing any physical activity, like yoga, during the lockown period, while another 19 per cent were not sure about engaging themselves in physical activities.

Besides, 57 per cent of the respondents were not engaged in any mind-calming practices like meditation, and 18 per cent were not sure about taking up meditative practices, the study said.

The respondents included 145 men and 86 women, aged 18 and above, with nearly 60 per cent of them residing in non- metro cities and rest from metros.

About 47.62 per cent of the respondents were employed in private or government sectors, and the remaining included students, retired persons and homemakers.

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Agencies
April 15,2020

Dear parents, if you want your children to have proper sleep, read this carefully. Joining a growing list of studies that tell parents to shun devices at bed-time, researchers say that children who use devices and decide what time they go to sleep, achieve less sleep and feel more sleepier the following day than their peers.

The study of children in this age-group (aged 11 to 13 years), published in the New Zealand Medical Journal, found most (72 per cent) of the 163 students interviewed by University of Otago researchers achieved recommended guidelines of an average 9 to 11 hours sleep nightly over one week.

"But that also means that almost one in four students did not achieve sleep within these guidelines, which highlights an area for improvement," said study researcher Kate Ford.

However, consistent with previous research in 15 to 17-year-old New Zealanders, the study results show less sleep on the nights where devices are used in the hour before bed.

According to the researchers, students who used devices before going to sleep were also more likely to report that they felt sleepy the following morning. Watching television before bed had no significant effect on sleep length.

There were also some interesting observations over the weekends where students went to bed later but woke later achieving similar sleep length to the school days, the researchers said.

A small group of students (six per cent) who reported less than seven hours of sleep, including a small number reporting not sleeping at all, according to the study,

Therefore, while the average across the week of 72 per cent of students reporting adequate sleep is reassuring, it is far from the goal of every child achieving sleep within the recommended guidelines," Ford said.

Dr Paul Kelly, head of the Sleep Health Service at Canterbury District Health Board, supervised the study and explained that the foundations for good health are based on proper nutrition, regular exercise and good sleep quality.

Sleep quality is often overlooked as a contributory factor to poor health.

"The study findings suggest the need for parental guidance around bedtimings and moderation of the use and availability of electronic devices before bed," Kelly said.

"Respect and protect your sleep, as good daytime functioning is reliant on adequate sleep," Kelly added.

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