A British girl who was told her afro hair was too delicate to donate for wig-making prompted a new wig-making approach to use it, BBC News reports.
When eleven year old Carly Gorton wanted to donate her afro hair to the Little Princess Trust charity, which makes natural hair wigs for children who have lost theirs from cancer treatment and other causes, she was initially frustrated as the charity said the hair was too delicate. Undeterred, Carly had urged the charity to rethink, which it did.
Following research and a trial to make them possible, the charity described the new wigs as a “historic breakthrough”.
“It’s really beautiful,” said Carly, of one of the new wigs.
A BMJ study showed that wigs positively impact psychological wellbeing for people with alopecia, attributed to increasing their confidence of going out in public and the perception of fewer comments about hair loss.
At a special school assembly, Carly’s mother Anna Mudeka then cut her daughter’s hair and it was donated for use in the first new wigs to be worn by other children.
Phil Brace, The Little Princess Trust’s chief executive, said Carly’s “determination” to donate her hair had pushed them to find a solution.
The charity worked with the 120-year-old London company Raoul to develop a wefting method to weave and tie the donated locks.
Carly’s mother, Anna Mudeka, said: “History has been made and we are so proud of Carly.
“Through her sheer determination and everyone pulling together to hear her voice, children of black and mixed heritage can now donate their hair to the Little Princess Trust.”
Ms Mudeka, of Southburgh, added that children needing wigs through illness could now receive a wig “true to their heritage”.
Carly and her mother’s campaign had created a “fundamental change in wig manufacturing”, said Mr Brace. “The commitment and work that has gone on has shown just what is possible when groups of people get together and bring different skills to find a solution.”
In an article by the BBC, one woman with cystic fibrosis recounts how the “absolute revolutionary” Kaftrio drug has improved her life.
Jody Lewis, 31, is an avid rider and one of around 80 people in Wales to have had Kaftrio, a “revolutionary” drug treatment for cystic fibrosis, at Liverpool Heart and Chest Hospital.
Cystic fibrosis is a genetic condition resulting in faulty cystic fibrosis transmembrane conductance regulator (CFTR) proteins which regulate the transfer of chloride ions into and out of the cells. The condition causes thick, sticky mucus to build up in the lungs, gastrointentinal system and other organs.
The treatment is suitable for around 90% of CF patients aged 12 and over and has been approved for use in the UK. Kaftrio is a triple combination of elexacaftor, tezacaftor which corrects the faulty CFTR protein, and ivacaftor, which potentiates CFTR.
Ms Lewis, said since taking it she had “a whole future and life” ahead of her. Her condition worsened about two and a half years ago, when she was put on continuous oxygen supply, needing four or five oxygen bottles a day, almost placed on a ventilator and considered for a lung transplant. This meant stopping riding and changing how she cared for her four dogs.
“I’d have to change my complete lifestyle just to survive. I get that I’d have a second chance at life but it wouldn’t be me, it wouldn’t be true to who I am,” she said. At her worst, she said she could barely cope with simple tasks such as making tea.
This all changed when she started taking Kaftrio last year.
“Within a week, my [oxygen saturation] was going up and up to 94, 96 and I wasn’t even on oxygen and I can’t remember the last time I saw those numbers, it was mad.
“I’m now as good as I was back when I was 25, so I’ve like regained six years of my life,” she said.
“When I was 25 I was fine, I was in work, living a normal life, so it’s given me all that back really,” she said, adding that it was “really emotional” and “fantastic” to be able to ride her horse again after two and a half years..
“I’ve got a whole future and life in front of me that I’ve never had to think about.”
Consultant Martin Ledson, clinical lead for respiratory medicine at Liverpool Heart and Chest Hospital, described the drug treatment as “absolutely revolutionary”, saying that it had changed the lives of 222 of the hospital’s patients.
He said that when his patients were born, they could expect to live to their 30s, so they have “lived all their lives with the knowledge that their life expectation could be 30 or even less”.
“What this drug does is extend that life expectancy who knows how long?
“Not only that, the patients immediately – within 24 hours – feel amazingly better. Their breathing tests improve, they get less chest infections, their digestion improves, they put on weight and in many cases need to take less treatment,” he said.
In order to improve transparency about the opioid crisis, the University of California San Francisco and Johns Hopkins University launched a digital public archive of documents from lawsuits against drug manufacturers.
The digital repository of publicly disclosed legal documents related to the crisis allows free, public access to anyone interested in the continuing litigation and uncovered evidence.
“All too often, the public never gets the benefit of seeing and learning from litigation that generally takes place behind closed doors,” said Caleb Alexander, MD, a professor of epidemiology and medicine at Johns Hopkins and the founding co-director of the Center for Drug Safety and Effectiveness, which will assist in maintaining the archive.
“Our focus is to be sure that the millions of pages of documents arising from opioid litigation ultimately see the light of day,” Alexander told MedPage Today. “We owe it to all those who have been impacted — especially patients and their loved ones — to see to it that these materials are placed in the public domain.”
The goal of the archive is to provide transparency into the methods used by drug companies to increase opioid sales, which led to the opioid epidemic in which, according to the CDC, over the past two decades, nearly 500 000 Americans died of overdoses involving an opioid. Additionally, the economic cost of the crisis in 2015-2018 was put at $2.5 trillion by the White House Council of Economic Advisers.
Most of the archive’s documents were released thanks to efforts by the Washington Post and the Charleston Gazette. Records include company emails, memos, presentations, sales reports, audit reports, budgets, Drug Enforcement Administration briefings, expert witness reports, and depositions of drug company executives.
The archive is located on a website called Drug Industry Archives, a UCSF project that houses documents illustrating how the pharmaceutical industry, academic institutions, continuing medical education organizers and regulatory agencies impact public health. (UCSF also maintains similar archives related to tobacco, food, chemicals, and fossil fuel industries.)
The Opioid Industry Documents Archive presently holds over 3300 legal documents, much of it coming from litigation in Kentucky and Oklahoma, as well as documents from the Insys investigation, which sold an oral fentanyl spray called Subsys. This archive’s launch coincides with the university hosting over 250 000 documents produced during Insys’ bankruptcy proceedings that resulted from successful lawsuits and criminal prosecutions.
“We don’t really know what’s in these documents yet, but there is a wealth of information,” said Kate Tasker, an associate librarian at UCSF who helps manage the archive. “Our number one goal is to make this information accessible and useful.”
Alexander said the opioid crisis was “an epidemic of catastrophic public health proportions.” He said that placing legal documents in the public domain is a crucial step to ensure that lessons are learned from the crisis.
“The primary goal is to ensure that history never repeats itself,” Alexander said. “And we can’t learn from past mistakes without understanding what those mistakes have been.”
Russian doctors stayed behind in a burning hospital to complete open-heart surgery on a patient after a fire broke out on the roof while they were operating.
It took firefighters over two hours to put out the blaze in the city of Blagoveshchensk. Using fans to keep smoke out of the operating room where a group of eight doctors and nurses was working on the patient, they also ran a power cable in to keep it supplied with electricity.
The heart bypass operation was finished in two hours before removing the patient to another site, the emergencies ministry said.
“There’s nothing else we could do. We had to save the person. We did everything at the highest level,” surgeon Valentin Filatov was quoted as saying by REN TV.
According to the ministry, when the fire broke out on the roof, 128 people were immediately evacuated from the hospital, which is extremely old. There were no reported injuries.
“The clinic was built more than a century ago, in 1907, and the fire spread like lightning through the wooden ceilings of the roof,” the ministry said. The fire was believed to have been started by a short circuit. The hospital is the only one in the region with a specialist cardiological unit.
“A bow to the medics and firefighters,” said the local regional governor, Vasiliy Orlov.
Welsh grandmother Maggie Shaftoe has a terminal brain tumour and doctors have told her she has less than two years to live.
Life with a terminal illness during the coronavirus pandemic and being in lockdown has caused difficulties for one couple making final memories.
Macmillan Cancer Support calls it an “acutely challenging time” for people living with a terminal diagnosis.
In 2017, the 63-year-old great-grandmother was diagnosed with anAnaplastic Pleomorphic Xanthoastrocytoma (APXA) brain tumour, which is very rare and most commonly occurs in children and young people with an average age for diagnosis at 12 years old. Her cancer was discovered by chance through a regular epilepsy check up and an MRI scan.
Mrs Shaftoe said that she has not seen her 11 grandchildren and great-granddaughter and she’s “just waiting for things to get back to normal”.
Together for more than 50 years, Mrs Shaftoe and her husband Chris first met as teenagers in a church choir in London. Mr Shaftoe said at this stage they “should be making the most of the time she has left and making memories with our family”.
“I think we’d like to go somewhere like Disneyland, or Lapland to see the northern lights or she’d love to go to the Cheddar Gorge,” said Mr Shaftoe, 65.
“But the pandemic has buried us in a great big hole and I don’t expect the situation to change.
“We’re noticing that Maggie’s memory is fading quite quickly now and she is getting worse day by day, and we understand what is coming,” he said.
In 2017 Mrs Shaftoe had an operation to remove the tumour and the following year had radiotherapy.
But Mr Shaftoe said this has only “delayed the inevitable” and his wife’s life expectancy “hangs on the effectiveness” of two anti-cancer drugs.
Since the operation, she has suffered difficulty with her memory, impaired speech, balance problems and is partially blind.
Doctors have told the couple that typically life expectancy for a patient with APXA would be five years.
Cancer Research UK said that the pandemic has had a “devastating impact on the lives of cancer patients”.
“Dealing with a cancer diagnosis and treatment is extremely difficult at any time, but the pandemic has added the stress of uncertainty, delays and shielding for some cancer patients,” said Martin Ledwick, head information nurse at the charity.
Mrs Shaftoe remains positive despite the situation, saying it helps to laugh.
“If you can make a joke of something, make a joke of it,” she said, speaking during Brain Tumour Awareness month.
“You go out to make a cup of tea and you end up peeling potatoes, and come back in and wonder why I haven’t got a cup of tea – you have to laugh at silly little things.”
However managing during lockdown has been “very difficult” and mundane tasks could be a “major headache”, according to her husband, who has medical conditions of his own.
Mr Shaftoe says they now have a carer who comes for an hour each morning.
But he said: “We need more care. We have spent most of the pandemic without a carer and it has been absolutely nightmarish trying to get Maggie one.”
Macmillan Cancer Support in Wales said it has heard from many people in isolation, which makes “a challenging situation even more difficult”.
“We know this is an acutely challenging time for people with cancer, the NHS and cancer care, and particularly for people who are living with a terminal diagnosis,” said Richard Pugh, Macmillan’s head of partnerships.
After weeks of tensions over Covid vaccine supplies, the UK and the European Union have said they are working together to improve their relationship, to “create a win-win situation and expand vaccine supply for all”.
The EU’s Internal Market Commissioner Thierry said that the disputes were with AstraZeneca, not the UK. “I know that there’s some tension… but as long as we have transparency, I think [relations] will be able to be normalised,” he said.
Some 19 EU countries have reported a rise in infections, giving their vaccine rollout an even greater urgency,The joint UK-EU statement said that “openness and global co-operation” would be key to tackling the pandemic.
“We are all facing the same pandemic and the third wave makes co-operation between the EU and UK even more important,” it said. “We will continue our discussions.” EU Health Commissioner Stella Kyriakides rejected any notion of punishing the UK. “We’re dealing with a pandemic and this is not seeking to punish any countries,” she said.
Responding to the question of whether the UK might retaliate, Mr Johnson told MPs he did not believe “that blockades of either vaccines or of medicines, of ingredients for vaccines” would be “sensible”. It is possible that companies might draw conclusions about future investments “in countries where arbitrary blockades are imposed”, he added. The EU’s Internal Market Commissioner Thierry Breton insisted the contention was with AstraZeneca and not the UK government. “I know that there’s some tension… but as long as we have transparency, I think [relations] will be able to be normalised,” he said.
Had AstraZeneca supplied the 120 million doses to the EU as was agreed, its member states would have achieved the same vaccination rates as the UK: “We have been heavily penalised and we just want to understand why”.
According to a report from the Center for Countering Digital Hate (CCDH), the majority of COVID and vaccine misinformation posts emanate from a dozen accounts.
Out of 812 000 anti-vaccine messages shared or posted on social media platforms between Feb 1 and March 16, 2021, 65% were attributed to just a handful of individuals, whom the report authors have dubbed the “Disinformation Dozen”, 13 users spread across 12 accounts (one of the accounts refers to a couple, Ty and Charlene Bollinger, who are alternative medicine activists).
Some of the individuals named include entrepreneur Joseph Mercola, author Robert F Kennedy Jr and chiropractor Ben Tapper, with the report including examples of the COVID misinformation that they shared on various social media platforms.
Mercola for example has shared his views on unproven COVID cures in various anti-vaxxer groups on Facebook, including one article saying “hydrogen peroxide treatment can successfully treat most viral respiratory illnesses, including coronavirus” getting 4600 shares.
The report notes that Robert Kennedy Jr often shares misinformation linked COVID vaccines to deaths, and his organisation, Children’s Health Defense, released a film in March that targeted American black and Latino communities with anti-vaccine messages.
“According to our recent report, anti-vaccine activists on Facebook, YouTube, Instagram and Twitter reach more than 59 million followers, making these the largest and most important social media platforms for anti-vaxxers,” said CCDH CEO Imran Ahmed.
“Despite repeatedly violating Facebook, Instagram and Twitter’s terms of service agreements, nine of the Disinformation Dozen remain on all three platforms, while just three have been comprehensively removed from just one platform,” the report added.
To combat the disinformation problem, the CCDH urged social media companies to deplatform the Disinformation Dozen, along with key organisations associated with the 12 individuals.
In a statement to Engadet, Facebook took issue with the report, claiming that “it taken action against some of the group”. However, the report contends that Facebook’s algorithm struggle to identify COVID misinformation.
Researchers have reported the case of a boy whose brain was able to rewire after a severe stroke that damaged much of his brain.
In the seventh grade, 13-year old Daniel Carr amazed his baseball coach with his ability to throw with his left hand, saying that it was the fastest he’d ever seen. However, he was unable to properly catch with his right hand.
Hearing this from the coach, Kellie Carr, Daniel’s mother, realised that his son had a number of quirks, such as favouring his left side when he was an infant, and his left-handedness emerged well before the normal age of two or three. However, she was unable to get any explanation for this until she met Nico Dosenbach, MD, PhD, who informed her that her son had had a stroke when he was a newborn.
MRI scans revealed large, bilateral voids in Daniel’s brain, but incredibly, he had no cognitive, behavioural or motor problems other than a lack of strength and dexterity in his right arm. “The extent of Daniel’s injuries may be on the edge of what’s compatible with life,” Dosenbach said.
Dainel’s remarkable recovery can be explained by his young age at the time the stroke.
“The brain can compensate more quickly and completely for strokes sustained in early childhood,” he said. “By contrast, large strokes in adults often cause death or severe functional impairment with little chance of recovery. However, the mechanics behind this are only beginning to be understood.”
More MRI scans were done on Daniel’s brain to determine its structure and pathology. Dosenbach and Laumann conducted high-resolution functional MRI scans to understand how Daniel’s brain had reorganised itself. With his mother’s consent, Daniel was further tested over a period of six years, including batteries of neurological tests, and more scans done. Timothy Laumann, MD, PhD, now a fourth-year psychiatry resident at Barnes-Jewish Hospital, had the expertise to analyse the data.
Looking at his medical records, the physician-scientists noted that he had an infection as a newborn, and was hospitalised with an IV drip. However, none of the physicians had suspected a stroke, which happens to one in every 4000 newborns. Daniel was sent home after a week, the doctors having suspected a viral infection.
“The risk of having a pediatric stroke greatly increases with a medical problem, especially an infection during the newborn period,” Dosenbach said. “However, usually there are more obvious signs that a stroke occurred. I can understand how no one suspected it.”
The researchers compared the images of Daniel’s brain to others of young adults, as well as Dosenbach’s own brain, which he had imaged and studied extensively.
“Part of Daniel’s brain structure is gone,” Laumann explained, referring to their analysis of the MRI data. “He’s missing almost a quarter of his cortex.”
The dead tissue was replaced by pockets of cerebrospinal fluid, which acts as a shock absorber, as well as delivering nutrients and removing waste. The surviving neurons formed interconnected islands that restored cognitive and motor functions, and neighbourhoods of healthy tissue were again reconnected.
“Our findings illustrate the brain’s tenacity at reorganizing and recovering functions damaged by a massive stroke affecting both sides of his brain,” Dosenbach said. “Future studies of functional remapping relative to tissue loss may provide additional insights. Our results raise the possibility that variability in outcomes may depend on specific features unique to an individual’s brain.”
Despite the extensive damage, Daniel completed tertiary education and now works as a diesel mechanic.
“His stroke still shocks me,” Kellie Carr said. “How could I have not known? But looking back, maybe it was better that way. I might have babied Daniel and been afraid to let him be a regular kid. Maybe the best thing for him was living normally.”
Daniel agreed: “I think about my right hand daily because I have to constantly think five steps ahead to figure out how to compensate for not being able to use it properly, like I did with the baseball glove. But the last thing I want is for people to act like something is wrong with me. I’m fine.”
Journal information: Timothy O Laumann et al. Brain network reorganisation in an adolescent after bilateral perinatal strokes, The Lancet Neurology (2021). DOI: 10.1016/S1474-4422(21)00062-4
An article in The Guardian explores how the COVID pandemic and its restrictions have also may have caused an erosion in the institutions of democracy around the world.
On Saturday, a vigil at Clapham Common in the UK for Sarah Everard, a woman believed to have been murdered by a police officer, was broken up by police in a heavy-handed manner which drew widespread criticism. Defending the Metropolitan police’s handling of the situation, assistant commissioner Helen Ball argued the force had to act “because of the overriding need to protect people’s safety” from COVID. In 2020, Black Lives Matter protestors were criticised for their actions in the first waves of the pandemic, but their actions did not cause a spike in infections. Indeed, the protests may have helped deter the spread of COVID due to their deterring people from going to restaurants and other forms of social gatherings.
While the Clapham Common event was not on the same scale, it is possible that even very large and boisterous protests are not ‘super-spreader’ events. And, according to the human rights organisation Liberty, they can be performed safely. For example a socially distanced rally was held in Tel Aviv in April last year against the Israeli prime minister, Benjamin Netanyahu, where thousands of people, each in their own space, separated by two metres, were able to shout and wave banners.
“Protest is the lifeblood of a healthy democracy, and it’s critical that we can all stand up to those in power, and make our voices heard,” said Lana Adamou, a lawyer at Liberty. “Safe, socially distanced demonstrations are perfectly possible, and it is the duty of the police to facilitate them, not block them. The current restrictions should be interpreted compatibly with our rights enshrined in the Human Rights Act.”
However a report published by Carnegie Europe in January observed that human rights are being eroded in the name of public health, with many governments using the pandemic as a pretext to crack down on dissent.
“While governments have claimed that they were imposing measures to tackle the pandemic, these measures often have been contradictory and have excessively restricted the right to peaceful assembly,” the report said, saying that while economic activities were enabled, large protests were still prohibited. In Sweden large groups were allowed to congregate in restaurants and at sporting events, but public gatherings and protests involving more than eight people were banned. It also noted that police used tactics such as kettling, a controversial tactic where police corral protestors into tight groups before arresting them, which can increase the spread of infection.
These restrictions have forced some campaigners to become creative in their protests. In the Netherlands, climate activists filled a square in front of the Dutch parliament in the Hague with 1000 shoes from all over the country. In Croatia, a civil society movement staged balcony protests against the governance of the mayor of Zagreb.
What campaigners in some countries will be asking is whether or not the pandemic has eroded the right to dissent, and to what extent will mass public protests be allowed to return once the COVID threat has passed.
Thanks to a young organ donor, Bronwen Fredericks has a new kidney that she and her mother Bridget are deeply thankful for. The 15-year-old was one of two patients at Red Cross War Memorial Children’s Hospital who received their new kidneys last month. With a new chance at their childhoods, they have a chance to embrace the spirit of “Living Well with Kidney Disease”, the 2021 theme for World Kidney Day tomorrow.
Bronwen said: “I’m really grateful to my donor and excited for my new life. I’m really looking forward to being able to dance again.”
According to her mother, a blood pressure test had alerted them to the problem.
“I would like to encourage everyone, especially parents, to do a regular general check-up with their children at a clinic or GP. A simple blood pressure test could show us that there was a serious problem and we were able to take action that saved my daughter,” she said.
“Irrespective of age, being diagnosed with kidney disease can pose a huge challenge for the patient and their family. It remains draining on those involved, be it emotional, financial, physical or a combination of these – but imagine the impact on a young child,” the Red Cross War Memorial Children’s Hospital said in a statement on Wednesday. The hospital conducts around 10 to 12 kidney transplants a year.
The Red Cross Hospital said it is aiming to reduce stress factors through education, empowerment and by building a partnership with patients and their families.
“The diagnosis and management, particularly in the advanced stages of kidney disease, impacts severely upon the lives of our young patients by reducing their ability to participate in everyday activities like attending school, participating in extra-curricular activities and socialising, whilst the whole family’s ability to travel and parents ability to work is also affected,” said Dr Deveshni Reddy, paediatric nephrologist at the hospital.
Current management includes dialysis to take the strain off of kidneys, and in more extreme cases, donor transplants. Professor Mignon McCulloch, the hospital’s head of paediatric nephrology and solid organ transplantation, said: “While we always try our best to treat chronic kidney disease and other kidney disorders through medical intervention, sometimes a surgical intervention, or dialysis and resultant kidney transplant, is the only option.
“The Red Cross War Memorial Children’s Hospital conducts around 10-12 kidney transplants per year, making it one of the most active paediatric transplant services in South Africa, which is only possible due to the close collaboration with the multi-disciplinary role-players from Groote Schuur Hospital and Red Cross.”
