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.

Comments

Add new comment

  • Coastaldigest.com reserves the right to delete or block any comments.
  • Coastaldigset.com is not responsible for its readers’ comments.
  • Comments that are abusive, incendiary or irrelevant are strictly prohibited.
  • Please use a genuine email ID and provide your name to avoid reject.
Agencies
February 20,2020

The health and future of every child and adolescent worldwide is under immediate threat from ecological degradation, climate change and exploitative marketing practices that push fast food, sugary drinks, alcohol and tobacco at children, said a new report on Wednesday.

No single country is adequately protecting children's health, their environment and their futures, according to the report by a commission of over 40 child and adolescent health experts from around the world.

The commission, convened by the World Health Organization (WHO), the United Nations children's agency, Unicef, and medical journal the Lancet, found that while the poorest countries need to do more to support their children's ability to live healthy lives, excessive carbon emissions --disproportionately from wealthier countries -- threaten the future of all children.

"Despite improvements in child and adolescent health over the past 20 years, progress has stalled, and is set to reverse," said former Prime Minister of New Zealand and Co-Chair of the Commission, Helen Clark.

"It has been estimated that around 250 million children under five years old in low- and middle-income countries are at risk of not reaching their developmental potential, based on proxy measures of stunting and poverty. But of even greater concern, every child worldwide now faces existential threats from climate change and commercial pressures," Clark said.

The report, titled "A Future for the World's Children?", includes a new global index of 180 countries, comparing performance on child flourishing and sustainability, with a proxy for greenhouse gas emissions, and equity, or income gaps.

India ranked 131 among the 180 countries in the index.

The index shows that children in Norway, the Republic of Korea, and the Netherlands have the best chance at survival and well-being, while children in the Central African Republic, Chad, Somalia, Niger and Mali face the worst odds.

However, when the authors took per capita CO2 emissions into account, the top countries trail behind: Norway ranked 156, the Republic of Korea 166, and the Netherlands 160.

Each of the three emits 210 per cent more CO2 per capita than their 2030 target.

The US, Australia, and Saudi Arabia are among the ten worst emitters.

If global warming exceeds 4 degree Celsius by the year 2100 in line with current projections, this would lead to devastating health consequences for children, due to rising ocean levels, heatwaves, proliferation of diseases like malaria and dengue, and malnutrition, said the report.

The only countries on track to beat CO2 emission per capita targets by 2030, while also performing fairly (within the top 70) on child flourishing measures are: Albania, Armenia, Grenada, Jordan, Moldova, Sri Lanka, Tunisia, Uruguay and Vietnam.

The report also revealed the distinct threat posed to children from harmful marketing. Evidence suggests that children in some countries see as many as 30,000 advertisements on television alone in a single year, while youth exposure to vaping (e-cigarettes) advertisements increased by more than 250 per cent in the US over two years, reaching more than 24 million young people.

Children's exposure to commercial marketing of junk food and sugary beverages is associated with purchase of unhealthy foods and overweight and obesity, linking predatory marketing to the alarming rise in childhood obesity, said the report.

The number of obese children and adolescents increased from 11 million in 1975 to 124 million in 2016 - an 11-fold increase, with dire individual and societal costs.

Comments

Add new comment

  • Coastaldigest.com reserves the right to delete or block any comments.
  • Coastaldigset.com is not responsible for its readers’ comments.
  • Comments that are abusive, incendiary or irrelevant are strictly prohibited.
  • Please use a genuine email ID and provide your name to avoid reject.
Agencies
July 15,2020

The first COVID-19 vaccine tested in the US revved up people's immune systems just the way scientists had hoped, researchers reported Tuesday -- as the shots are poised to begin key final testing.

No matter how you slice this, this is good news, Dr. Anthony Fauci, the U.S. government's top infectious disease expert, told The Associated Press.

The experimental vaccine, developed by Fauci's colleagues at the National Institutes of Health and Moderna Inc., will start its most important step around July 27: A 30,000-person study to prove if the shots really are strong enough to protect against the coronavirus.

But Tuesday, researchers reported anxiously awaited findings from the first 45 volunteers who rolled up their sleeves back in March. Sure enough, the vaccine provided a hoped-for immune boost.

Those early volunteers developed what are called neutralizing antibodies in their bloodstream -- molecules key to blocking infection -- at levels comparable to those found in people who survived COVID-19, the research team reported in the New England Journal of Medicine.

This is an essential building block that is needed to move forward with the trials that could actually determine whether the vaccine does protect against infection, said Dr. Lisa Jackson of the Kaiser Permanente Washington Research Institute in Seattle, who led the study.

There's no guarantee but the government hopes to have results around the end of the year -- record-setting speed for developing a vaccine.

The vaccine requires two doses, a month apart.

There were no serious side effects. But more than half the study participants reported flu-like reactions to the shots that aren't uncommon with other vaccines -- fatigue, headache, chills, fever and pain at the injection site. For three participants given the highest dose, those reactions were more severe; that dose isn't being pursued.

Some of those reactions are similar to coronavirus symptoms but they're temporary, lasting about a day and occur right after vaccination, researchers noted.

Small price to pay for protection against COVID, said Dr. William Schaffner of Vanderbilt University Medical Center, a vaccine expert who wasn't involved with the study.

He called the early results a good first step, and is optimistic that final testing could deliver answers about whether it's really safe and effective by the beginning of next year.

It would be wonderful. But that assumes everything's working right on schedule, Schaffner cautioned.

Moderna's share price jumped nearly 15 percent in trading after US markets closed. Shares of the company, based in Cambridge, Massachusetts, have nearly quadrupled this year.

Tuesday's results only included younger adults. The first-step testing later was expanded to include dozens of older adults, the age group most at risk from COVID-19.

Those results aren't public yet but regulators are evaluating them. Fauci said final testing will include older adults, as well as people with chronic health conditions that make them more vulnerable to the virus and Black and Latino populations likewise affected.

Nearly two dozen possible COVID-19 vaccines are in various stages of testing around the world. Candidates from China and Britain's Oxford University also are entering final testing stages.

The 30,000-person study will mark the world's largest study of a potential COVID-19 vaccine so far. And the NIH-developed shot isn't the only one set for such massive U.S. testing, crucial to spot rare side effects. The government plans similar large studies of the Oxford candidate and another by Johnson & Johnson; separately, Pfizer Inc. is planning its own huge study.

Already, people can start signing up to volunteer for the different studies.

People think this is a race for one winner. Me, I'm cheering every one of them on, said Fauci, who directs NIH's National Institute of Allergy and Infectious Diseases.

We need multiple vaccines. We need vaccines for the world, not only for our own country. Around the world, governments are investing in stockpiles of hundreds of millions of doses of the different candidates, in hopes of speedily starting inoculations if any are proven to work.

Comments

Add new comment

  • Coastaldigest.com reserves the right to delete or block any comments.
  • Coastaldigset.com is not responsible for its readers’ comments.
  • Comments that are abusive, incendiary or irrelevant are strictly prohibited.
  • Please use a genuine email ID and provide your name to avoid reject.
Agencies
May 8,2020

As Europe and the US loosen their lockdowns against the coronavirus, health experts are expressing growing dread over what they say is an all-but-certain second wave of deaths and infections that could force governments to clamp back down.

"We are risking a backslide that will be intolerable," said Dr Ian Lipkin of Columbia University's Center for Infection and Immunity.

Around the world, German authorities began drawing up plans in case of a resurgence of the virus. Experts in Italy urged intensified efforts to identify new victims and trace their contacts. And France, which has not yet eased its lockdown, has already worked up a "reconfinement plan" in the event of a new wave.

"There will be a second wave, but the problem is to which extent. Is it a small wave or a big wave? It is too early to say," said Olivier Schwartz, head of the virus unit at France's Pasteur Institute.

In the US, with about half of the states easing their shutdowns to get their economies restarted and cellphone data showing that people are becoming restless and increasingly leaving home, public health authorities are worried.

Many states have not put in place the robust testing that experts believe is necessary to detect and contain new outbreaks. And many governors have pressed ahead before their states met one of the key benchmarks in the Trump administration's guidelines for reopening -- a 14-day downward trajectory in new illnesses and infections.

"If we relax these measures without having the proper public health safeguards in place, we can expect many more cases and, unfortunately, more deaths," said Josh Michaud, associate director of global health policy with the Kaiser Family Foundation in Washington.

Cases have continued to rise steadily in places such as Iowa and Missouri since the governors began reopening, while new infections have yo-yoed in Georgia, Tennessee and Texas.

Lipkin said he is most worried about two things: the reopening of bars, where people crowd together and lose their inhibitions, and large gatherings such as sporting events, concerts and plays. Preventing outbreaks will require aggressive contact tracing powered by armies of public health workers hundreds of thousands of people strong, which the US does not yet have, Lipkin said.

Worldwide the virus has infected more than 36 lakh people and killed over a quarter-million, according to a tally by Johns Hopkins University that experts agree understates the dimensions of the disaster because of limited testing, differences in counting the dead and concealment by some governments.

The US has recorded over 70,000 deaths and 12 lakh confirmed infections, while Europe has reported over 140,000 dead.

This week, the researchers behind a widely cited model from the University of Washington nearly doubled their projection of deaths in the US to around 134,000 through early August, in large part because of the easing of state stay-at-home restrictions. Newly confirmed infections per day in the US exceed 20,000 and deaths per day are running well over 1,000.

In hard-hit New York City, which has managed to bring down deaths dramatically even as confirmed infections continue to rise around the rest of the country, Mayor Bill de Blasio warned that some states may be reopening too quickly.

"My message to the rest of the country is learn from how much effort, how much discipline it took to finally bring these numbers down and follow the same path until you are sure that it is being beaten back," he said on CNN, "or else, if this thing boomerangs, you are putting off any kind of restart or recovery a hell of a lot longer."

A century ago, the Spanish flu epidemic's second wave was far deadlier than its first, in part because authorities allowed mass gatherings from Philadelphia to San Francisco.

"It is clear to me that we are in a critical moment of this fight. We risk complacency and accepting the preventable deaths of 2,000 Americans each day," epidemiologist Caitlin Rivers, a professor at Johns Hopkins, told a House subcommittee in Washington.

President Donald Trump, who has pressed hard to ease the restrictions that have throttled the economy and thrown more than three crore Americans out of work, pulled back Wednesday on White House plans revealed a day earlier to wind down the coronavirus task force.

He tweeted that the task force will continue meeting indefinitely with a "focus on SAFETY & OPENING UP OUR COUNTRY AGAIN".

Underscoring those economic concerns, the European Union predicted the worst recession in its quarter-century history. And the US unemployment rate for April, which comes out on Friday, is expected to hit a staggering 16 per cent, a level last seen during the Great Depression of the 1930s.

Governors continue to face demands, even lawsuits, to reopen. In Michigan, where armed demonstrators entered the Capitol last week, the Republican-led Legislature sued Democratic Governor Gretchen Whitmer, asking a judge to declare invalid her stay-at-home order, which runs at least through May 15.

In hard-hit Italy, which has begun easing restrictions, Dr Silvio Brusaferro, president of the Superior Institute of Health, urged "a huge investment" of resources to train medical personnel to monitor possible new cases of the virus, which has killed about 30,000 people nationwide.

He said that contact-tracing apps which are being built by dozens of countries and companies are not enough to manage future waves of infection.

German Chancellor Angela Merkel said after meeting with the country's 16 governors that restaurants and other businesses will be allowed to reopen in the coming weeks but that regional authorities will have to draw up a "restriction concept" for any county that reports 50 new cases for every 100,000 inhabitants within a week.

Lothar Wieler, head of Germany's national disease control centre, said scientists "know with great certainty that there will be a second wave" of infections.

Britain, with over 30,000 dead, the second-highest death toll in the world behind the US, plans to extend its lockdown but has begun recruiting 18,000 people to trace contacts of those infected.

In other developments, the US Centers for Disease Control and Prevention said nearly 5,000 coronavirus illnesses and at least 88 deaths have been reported among inmates in American jails and prisons. An additional 2,800 cases and 15 deaths were reported among guards and other staff members.

Comments

Add new comment

  • Coastaldigest.com reserves the right to delete or block any comments.
  • Coastaldigset.com is not responsible for its readers’ comments.
  • Comments that are abusive, incendiary or irrelevant are strictly prohibited.
  • Please use a genuine email ID and provide your name to avoid reject.