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
April 21,2020

The Lockdown is not a cure but a critical strategy to prevent the geographical spread of COVID-19.

While pandemics at this level involves actual life threatening situations for individual's or significant others in one's immediate circle, it envisages a marked disruption in routine life. Even after the pandemic has been contained and will come to pass; it's aftermath will leave a trailblazer which demands planning and implementation of a post pandemic reconstruction of society with potentially traumatic experiences varying in intensity, multiplicity and duration.

Degree of Trauma

It would do well for each one of us to realise that the pandemic is "potentially traumatic", since not everyone will experience COVID -19 as a traumatic event in their lives. Yet, there will be those who may develop post pandemic stress reactions, depression and related dysfunction and pathological reactions while still other exhibit healthy reactions to the same set of circumstances.

"Psychological reactions to the pandemic can be distilled into four distinct prototypical patterns, namely, Resilience, Recovery, Chronic and Delayed patterns which may vary in intensity, multiplicity, and duration. Resilient individual have an ability to bounce back from adversity and experience modest or little disruption in normal functioning and are able to maintain a relatively stable, healthy levels of psychological functioning even after enduring the pandemic. Recovery pattern is characterised by relatively rapid reduction in symptoms and return to normal functioning whereas chronic pattern is characterised by symptoms and dysfunction of a long duration," says Pune-based military psychologist Lt Col Dr Samir Rawat.

Challenges at the Individual and Community Levels

From a psychological perspective, post pandemic reconstruction would entail catering to the problems, concerns and needs of those adversely impacted by the COVID -19 with stress symptoms typically characterised by individual's experiencing an overwhelming trauma of the pandemic (for example, recurring nightmares/ breaking into a cold sweat, flashback of stressful events, increasing irritability, low frustration tolerance or emotional numbing).

It could also manifest in depressive symptoms which may result in lack of interest or diminished pleasure in activities and things which you earlier liked to do, feelings of worthlessness or even survivor guilt in case of a loss of a loved one due to COVID-19, fleeting thoughts of death and suicidal ideation. Physical symptoms, on the other hand could be a decrease in appetite, weight and sleep problems, inability to focus and lack of concentration.

Undoubtedly, the pandemic will cause a financial loss of varying magnitude to many, especially the marginalised and economically disadvantaged strata of daily wage earners; it will also lead to loss of jobs (already beginning to show), homelessness, occupational difficulties and new challenges in interpersonal relations at work and on the home front, besides physical health problems and psychological barriers with new norms of accepted social behaviour (social distancing, handshakes, an obsession for cleanliness to name a few).

Emotional battles

Many factors may influence whether individuals come out stronger and more resilient or surrender to the pandemic. Emotion Regulation is one such long term critical factor that can play an important role in contributing to varying degrees of adaptation with negative or positive outcomes. While we know that primary emotions are fear, anger, disgust, joy, anticipation, acceptance, sadness and surprise, other basic emotions include wonder, love, desire, joy, hatred, sadness, attachment, disgust, rage and even expectancy .

To be able to regulate these emotions and avoid negativity , especially on social media platforms is likely to increase efforts in emotion regulation which involves initiating, increasing or maintaining an emotional response.

This means by regulating or on the other hand by stopping, decreasing or avoiding an emotional response, that is, by down-regulating, depending on the individual's objectives and goals or his /her ability to regulate emotions in the valued and given direction.

"One of the best ways to regulate emotions is through cognitive restructuring wherein we change the way we think; after all it is not the event but the interpretation of the event which is perceived as stressful and finding meaning promotes resilience and reduces risk and vulnerability to stress," advises Dr Rawat.

Adding, "Clearly, we need to have a psychological plan to prevent, mitigate and minimise negative outcomes by post pandemic reconstruction of society at an individual and community level all over the country; this has to be integrated by all leaders across verticals in diverse domains."

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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.

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News Network
February 4,2020

Toronto, Feb 4: People who text while walking face a higher risk of an accident than those listening to music or talking on the phone, a study has found.

The study, published in the journal Injury Prevention, found that smartphone texting is linked to compromised pedestrian safety, with higher rates of 'near misses', and failure to look left and right before crossing a road.

Researchers from the University of Calgary in Canada call for a more thorough approach to exploring the impact of distracted pedestrian behaviours on crash risk.

Worldwide, around 270,000 pedestrians die every year, accounting for around a fifth of all road traffic deaths, according to the researchers.

'Pedestrian distraction' has become a recognised safety issue as more and more people use their smartphones or hand held devices while walking on the pavement and crossing roads, they said.

The researchers looked for published evidence to gauge the potential impact on road safety of hand-held or hands-free device activities.

This included talking on the phone, text messaging, browsing and listening to music.

From among 33 relevant studies, they pooled the data from 14 -- involving 872 people -- and systematically reviewed the data from another eight.

The analysis showed that listening to music wasn't associated with any heightened risk of potentially harmful pedestrian behaviours.

Talking on the phone was associated with a small increase in the time taken to start crossing the road, and slightly more missed opportunities to cross the road safely.

The researchers found that text messaging emerged as the potentially most harmful behaviour.

It was associated with significantly lower rates of looking left and right before or while crossing the road, and with moderately increased rates of collisions, and close calls with other pedestrians or vehicles, they said.

Texting also affected the time taken to cross a road, and missed opportunities to cross safely, but to a lesser extent, according to the researchers.

The review of the eight observational studies revealed that the percentage of pedestrians who were distracted ranged from 12 to 45 per cent, they said.

It also found behaviours were influenced by several factors, including gender, time of day, solo or group crossing, and walking speed.

The researchers acknowledge "a variety of study quality issues" which limit the generalisability of the findings.

"Given the ubiquity of smartphones, social media, apps, digital video and streaming music, which has infiltrated most aspects of daily life, distracted walking and street cross will be a road safety issue for the foreseeable future," the researchers noted.

"And as signage and public awareness campaigns don't seem to alter pedestrian behaviour, establishing the relationship between distracted walking behaviour and crash risk is an essential research need," they said.

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