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
June 4,2020

The World Health Organisation on Wednesday said that anti-malarial drug hydroxychloroquine (HCQ) will return to the solidarity trial for the potential treatment of coronavirus disease.

At a press conference in the WHO headquarters in Geneva, Director General Tedros Adhanom Ghebreyesus said: "On the basis of the available mortality data, the members of the committee recommended that there are no reasons to modify the trial protocol. The Executive Group received this recommendation and endorsed continuation of all arms of the solidarity trial, including hydroxychloroquine."

The world health body had temporarily suspended the usage of HCQ from the solidarity trial for coronavirus treatment on May 25 soon after a study published in one of the most reliable medical journals, which had suggested that the drug could cause more fatalities among COVID-19 patients.

However, the WHO chief said that the decision was taken as a precaution while the safety data was reviewed.

Ghebreyesus also said that the Data Safety and Monitoring Committee will continue to closely monitor the safety of all therapeutics being tested in the solidarity trial.

"So far, more than 3,500 patients have been recruited in 35 countries. WHO is committed to accelerating the development of effective therapeutics, vaccines and diagnostics as part of our commitment to serving the world with science, solutions and solidarity," he said.

Soon after HCQ was suspended from the trial, the Indian government had said that the antimalarial drug has been known for its benefits for a long time and its usage will be continued on the frontline workers, including police and healthcare professionals, as prophylaxis. The government had also said that studies were being conducted and the drug would be included in the clinical trial also for the treatment of coronavirus disease.

US President Donald Trump also had strongly advocated the use of HCQ and called it a "game-changer". He went to the extent of saying that he had taken the medicine.

Launched by WHO and partners, solidarity trial is an international clinical trial to find an effective treatment for COVID-19, including drugs to slow the progression of the disease or improve survival. The trial, which enrols patients from different countries, "will compare four treatment options against standard of care to assess their relative effectiveness against COVID-19", said WHO. 

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Agencies
June 20,2020

At a time when the country is yet to recover from the shock of losing 20 Indian soldiers in a violent clash with the Chinese People's Liberation Army (PLA) troops in Ladakh's Galwan Valley, another shocker has come to light with news coming of a malware hitting the Indian Railways network and snooping its data for foreign countries, including train movements, sources in the intelligence agencies said on Friday.

Meanwhile, Railways Board Chairman V K Yadav said that the national transporter keeps on receiving malware security threats and the engineers in the railways keep on taking all precautions and keeps on updating the firewalls to prevent data theft.

The news comes a day after the Dedicated Freight Corridor Corporation Limited (DFCCIL) decided to terminate the 417-km signalling project worth Rs 471 crore with Chinese firm Beijing National Railway Research and Design Institute of Signal and Communication Group Company Limited (BNRRDISC) due to non-performance.

According to intelligence agency sources, the system of the Railways has been hit by the APT 36 Malware campaign. The source said that the intel agencies have also alerted the Railway Board to instantly disconnect the system with the Internet and change the password immediately.

The source said the APT 36 Malware is connected to Pakistan, which is a close ally of China. The source further said that following the red flag from the intel agencies, the system of a senior Principal Executive Director of the Railways, working in its vigilance department, has been taken for cleaning the malware threat.

As per the source, through the APT 36 Malware campaign, data stored in the Indian Railways systems were being stolen and stored in foreign locations, including the movement of the trains.

He further claimed that the APT 36 Malware also tried to take defence movement data. 

The source said the APT 36 Malware effect was reported from at least four systems of the Indian Railways.

Responding to queries, the Railways Board Chairman said: "Whether it is our systems or the IRCTC, we continuously update it with firewalls, and it is an ongoing process as we get the updates." 

Yadav said that our system is updated time to time. "We get malware threat on a regular basis. And we look at it continuously," he said. 

When pressed further about the malware threat in four railways systems, he said: "It has not come to our notice that some information has been leaked. Our systems are secure and our engineers keep on working on it."

According to intel sources, besides Railways, there was also malware threat in the defence, central police organisations, education and healthcare sectors, the source said.

In view of the threat, the intel agencies have asked the departments concerned to change the passwords of emails and online services from secure computers, format the hard-disk of the affected computers after taking back-up and re-install the operating systems and other softwares.

Sources in the Railways had said on Thursday that DFFCIL, which is looking after the work of the Dedicated Freight Corridor Project, has decided to terminate the tender with BNRRDISC.

A source in the Railway Ministry said that it has informed the Railway Board and the World Bank to take the final decision in the matter.

The source said the project was awarded to the Chinese firm in 2016 for signalling and telecommunication work on the 417-km Kanpur-Deen Dayal Upadhyaya section of the Eastern Dedicated Freight Corridor (EDFC). 

The source disclosed that the contract was awarded to the Beijing National Railway Research and Design Institute in June 2016. The source further said that even after four years, the progress in the project was only 20%. The issues that led to the termination of the project are reluctance by the company to furnish technical documents, as per the contract agreement, such as logic design of electronic interlocking.

The source further said that other issues like non-availability of their engineers and authorised personnel on site were a serious constraint. Even physical work could not progress as they have no tie-up with local agencies. 

The 3,373-km DFC, a flagship project of the Railways, aims to augment rail transport capacity to meet the growing requirement of movement of goods by segregating freight from passenger traffic.

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Agencies
July 4,2020

The Union health ministry on Friday revised the dosage of anti-viral drug remdesivir to be administered to coronavirus patients in the moderate stage of illness from the earlier six days to five days as it issued an updated 'Clinical Management Protocols for COVID-19'.

The drug, administered in the form of injection, should be given at a dose of 200 mg on day one followed by 100 mg daily for four days (total five days), the new treatment protocols stated.

The Health Ministry on June 13 had allowed the use of remdesivir for restricted emergency use in moderate cases under "investigational therapies".

"Under emergency use authorisation, remdesivir may be considered for patients in moderate stage requiring oxygen support," the document stated.

It is not recommended for those with severe renal impairment and high level of liver enzymes, pregnant and lactating women, and those below 12 years, it said.

The ministry also okayed off-label application of tocilizumab, a drug that modifies the immune system or its functioning, and convalescent plasma for treating COVID-19 patients in the moderate stage of illness as "investigational therapies".

It also recommended hydroxychloroquine for patients during the early course of the disease and not for critically-ill patients.

On June 27, the ministry had included an inexpensive, widely used steroid dexamethasone in treatment protocols for COVID-19 patients in the moderate to severe stages of their illness among other therapeutic measures.

The ministry advised use of dexamethasone, which is already used in a wide range of conditions for its anti-inflammatory and immunosuppressant effects, as an alternative choice to methylprednisolone for managing moderate to severe cases of coronavirus infection.

India's COVID-19 cases soared by over 20,000 in a day for the first time taking the country's total tally to 6,25,544 on Friday while the death toll climbed to 18,213 with 379 new fatalities, according to the Union Health Ministry data updated at 8 am.

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