Tag: general interest

A Neurologist Confronts His Alzheimer’s Disease

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Neurologist Daniel Gibbs, MD, PhD, related his experiences of having been diagnosed with Alzheimer’s disease and taking part in clinical trials of possible treatments for it.

“I’m fascinated by this disease that, for my entire career as a scientist and a neurologist, I could only observe from the outside,” Dr Gibbs wrote in his new book, A Tattoo on my Brain: A Neurologist’s Personal Battle against Alzheimer’s Disease. “Now I’ve got a front-row seat — or rather, I’m in the ring with the tiger.”

Dr Gibbs stumbled upon his diagnosis accidentally, when he and his wife tested their DNA to learn about their ancestry that he discovered he had two copies of the APOE4 allele, the most common genetic risk factor for Alzheimer’s disease.

Because he had an early diagnosis, Dr Gibbs has volunteered to participate in several Alzheimer’s clinical trials in recent years, including one for aducanumab, the controversial Alzheimer’s treatment the FDA is expected to decide upon in June.

During a trial of aducanumab, he developed a serious amyloid-related imaging abnormality (ARIA) involving both brain oedema and intracerebral haemorrhage, which he recovered from. Dr Gibbs went on to co-author a case report about the clinical course and treatment of his complication. In the wake of much controversy, aducanumab has today received FDA approval.

MedPage Today interviewed Dr Gibbs on his experiences and perspectives since his Alzheimer’s diagnosis.

Dr Gibbs said that “as a patient and as a neurologist” it is a coping mechanism which gives hime “a huge advantage” to be able to look at the disease through his two “masks”. “Looking at it from the neurologist scientist’s point of view is a lot less threatening and is intellectually very satisfying. I enjoy reading and writing about it,” he said.

Regarding his future, he said: “One of the messages I try to get across in the book is that you need to plan for the future while you are still cognitively intact, and make very clearly known what you want done when you’re unable to give instructions about your care. I’ve done that. My family knows, my doctor knows: I don’t want anything done if I can’t participate in making decisions.” 

Dr Gibbs said he was excited to volunteer for the aducanumab study partly because of the way aducanumab was discovered; a reverse-engineered antibody found in cognitively normal aged people. Another reason was the more aggressive nature of the trial. He explained the meaning of “tattoo on my brain” alluded to in the title of his book, an adverse effect of the experimental drug.

“For me, a ‘tattoo on my brain’ has two forms. In the ARIA — the amyloid-related imaging abnormality complication I had from aducanumab — there was both leakage of fluid causing swelling in my brain and leakage of blood, microhaemorrhages. Those went away, as did the swelling in my brain, but they left behind this haemosiderin, this iron-containing pigment which is not dissimilar to tattoo ink, if you will.

“I haven’t had a recent MRI scan, but at least the last one I looked at a year or two ago still showed those little dots of hemosiderin. In a literal sense, that is the tattoo on my brain. In the figurative sense, the tattoo is a symbol of a kind of coming out of the closet and showing something that you’re not ashamed of.” 

The book, he said, is about people with early disease and the children of people with Alzheimer’s disease because they’re at risk. The aim is to “loosen up the conversation” so that interventions such as lifestyle changes can take place.

He suspects that the first disease-modifying drugs will be effective in early stages, which are going to be really hard studies to do. Recruiting participants without cognitive impairment but the pathology of  of Alzheimer’s disease is extremely difficult.
Finally, he offered some advice on dealing with Alzheimer’s.

“What I would recommend is for everybody to start doing things that are good for them. A heart-healthy diet is good for you in so many ways. It’s hard to say that’s not a good idea, although we’re a country of hamburger-loving people. And exercise — I don’t know how you overcome that bar of convincing people if you want to be a healthy 70- or 80-year-old, you have to exercise and get a good diet. And good sleep.”

Source:MedPage Today

COVID Sniffer Dogs Have a 94% Sensitivity, Study Shows

Image by Foto-Rabe from Pixabay

Quickly and efficiently screening incoming travellers for COVID is currently beyond present technology, but dogs — with their keen sense of smell that has aided humans for thousands of years — may be a solution.

An Ekurhuleni-based company is in the final stages of training dogs to be deployed as COVID sniffers at South African points of entry, just in time for the expected third wave, eNCA reports.

Currently, the most widespread test is the rapid antigen (lateral flow) test, which has been shown to produce more false positives for COVID than real detections in low prevalence situations — such as travellers arriving in a country.

Alternatively, the polymerase chain reaction (PCR) test has the greatest sensitivity but is time-consuming and expensive. And most currently available tests involve nasopharyngeal swabs — an unpleasant experience for most people. 

Dogs, with their keen sense of smell have long been used to sniff out drugs and explosives. In recent years they have also been trained to sniff out certain cancers and malaria, although they are not regularly used for this.
Using medical sniffer dogs has the advantage of being extremely quick and could be used in resource-constrained settings.

In the first months of the pandemic, many wondered whether dogs could in fact smell the disease, and began training dogs to see if it was possible. 
Past studies had already established that the volatile organic compounds (VOCs) released in body odour change during respiratory infections. VOCs associated with COVID infection showed a clear distinction between infected and uninfected individuals, suggestive of a strong, distinctive smell.

Initial trials with trained sniffer dogs at airports in France, Lebanon and FInland found that the dogs were even capable of detecting infection before it could be picked up with clinical tests.

A recent study led by the London School of Hygiene & Tropical Medicine (LSHTM) estimated that a plane with 300 passengers could be screened in 30 minutes with two sniffer dogs, and only those passengers identified by the dogs would be required to take a PCR test.

The study, which is not yet peer-reviewed and which is currently available as a pre-print, found that dogs could be trained to detect COVID in 94.3% (test sensitivity) — comparable to the gold standard of PCR tests with 97.2% sensitivity. They also have a specificity of 92%, meaning that they have a low rate of false positives.

Dr Claire Guest, Chief Scientific Officer at Medical Detection Dogs, which assisted in the study, said: “These fantastic results are further evidence that dogs are one of the most reliable biosensors for detecting the odour of human disease. Our robust study shows the huge potential for dogs to help in the fight against COVID.

“Knowing that we can harness the amazing power of a dog’s nose to detect COVID quickly and non-invasively gives us hope for a return to a more normal way of life through safer travel and access to public places, so that we can again socialise with family and friends.”

Besides simple detection, the dogs could also serve as a visible deterrent to people wanting to travel with fake COVID passports, the authors said.
The findings of their study also provided valuable knowledge which could be applied to future pandemics.
The authors acknowledged the limitation that the dogs were conducting the tests in a controlled environment as opposed to the real world.

Primary source: London School of Hygiene & Tropical Medicine

Secondary source: eNCA

Journal information: Pre-print available online

Indian Doctors Hit Back at Guru’s Inflammatory Remarks

Image source: Naveed Ahmed on Unsplash

Doctors in India have hit out against yoga guru Baba Ramdev over his controversial statements against modern medicine and mocking of COVID patients.

Recently, the controversial guru said that tens of thousands died of COVID after taking modern medicines, and also mocked patients for trying to get oxygen cylinders. 

The guru subsequently withdrew his statement after being criticised by the country’s health minister. But on Monday he again took a swipe at modern medicine for not having a cure for some diseases.

Despite India’s modern allopathic healthcare system, alternative therapies like ayurveda and homoeopathy are hugely popular in India. This has helped many gurus to launch successful businesses with sales of herbal medicines and products. India also has a Ministry of Ayurveda, Yoga & Naturopathy, Unani, Siddha and Homoeopathy (Ayush) that promotes traditional medicine systems.

The Indian Medical Association (IMA), which represents allopathy doctors in India, has criticised the guru for his “insensitive” remarks in the middle of the pandemic. Such statements from a guru with millions of followers were “irresponsible and demoralising”, said doctors spoken to by the BBC.
The country has been grappling with a surge of infections caused by a ‘double mutant’ SARS-CoV-2 variant as well as prematurely relaxed social distancing rules.

The controversy
A video of Baba Ramdev mocking patients for trying to find oxygen went viral earlier this month, making references to oxygen shortages in several cities in April and May.

“God has given us free oxygen, why don’t we breathe that? How can there be a shortage when God has filled the atmosphere with oxygen? Fools are looking for oxygen cylinders. Just breathe the free oxygen. Why are you complaining about shortage of oxygen and beds and crematoriums?” he said.

The statement drew sharp criticism from doctors and families of COVID patients who demanded an apology.

Just two weeks later, another video surfaced in which he criticises doctors, blaming COVID deaths on them. Many doctors expressed their anger over Twitter, some went so far as to demand his arrest. In the face of mounting pressures, India’s Health Minister Dr Harsh Vardhan issued a statement asking the guru to withdraw his remarks.

“Allopathy and the doctors attached to it have given new lives to millions of people. It’s very unfortunate for you to say that people died from consuming allopathic medicines.

“We should not forget that this battle can only be won through united efforts. In this war, our doctors, nurses and other health workers are risking their lives to save people’s lives. Their dedication towards serving mankind in this crisis is unparalleled and exemplary,” Dr Vardhan said.

Baba Ramdev withdrew his controversial statement in a Sunday tweet — only to issue a letter the next day asking the IMA why modern medicine had no cure for 25 diseases, including diabetes and hypertension.

This has again infuriated doctors. Prominent pulmonologist Dr A Fathahudeen, who has treated thousands of COVID patients, told the BBC that such statements cause lasting damage.

“For more than a year, healthcare workers like me have been in a war-like situation. We have saved tens of thousand of lives. It’s really unfortunate, insulting and hurtful to read such statements,” he said.

Dr Fathahudeen added that modern medicine had evolved over the years with constant research and studies. “We follow evidence-based practice. At any given time, thousands of researchers are working to come up with cures. Look at the progress we have made in cancer treatment. We have to constantly evolve and learn. It’s hard to trust any branch of medicine that offers absolute cure for every disease.”

Dr Fathahudeen also said that such statements manifest doubts in the minds of people when trust in medicines and vaccines is most needed in the middle of a raging pandemic.

Baba Ramdev’s rise to fame
Televised yoga classes were Baba Ramdev’s ticket to fame; he had a following of millions and he received worldwide praise for promoting yoga and healthy living.

He successfully leveraged his fame to create a business empire. In 2006, he helped launch a company called Patanjali Ayurveda to sell herbal medicines and a few years later, the business expanded to sell almost any product. Since last year, the company has been selling a product called Coronil that it has made a number of false claims over, including that it was a WHO-approved COVID treatment.

Source: BBC News

Validity of Screen Time Studies Questioned

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In the largest study of its kind to date, a systematic review and meta-analysis of people’s perceptions of their screen time compares to their actual usage, estimates of usage were found to be accurate only in about five per cent of studies.

Multiple studies have linked increasing amounts of ‘screen time’, looking at and using devices such as computers, tablets and smartphones, to a wide range of negative health outcomes such as depression and inactivity.

The international team say their results cast doubt on the validity of research on the impact of screen time on mental health, and its influences on government policy, as the vast majority rely on participants’ self-reported estimates on the amount of time spent on digital devices, rather than logs of actual usage, or tracked time. This research was published in Nature Human Behaviour

For lead researcher Dr Doug Parry at Stellenbosch University, the studies highlight how much our current perceptions of technology are built up on long-lasting, unchallenged assumptions.

“For decades, researchers have relied on estimates of how we use various technologies to study how people use digital media and the potential outcomes this behaviour can lead to. Our findings suggest that much of this work may be on unstable footing.”

“The screen time discrepancies highlight that we simply do not know enough yet about the actual effects (both positive and negative) of our media use. Researchers, journalists, members of the public, and crucially policy makers need to question the quality of evidence when they consider research on media uses and effects. We can no longer simply take claims of harmful effects at face value.”

The researchers also investigated whether questionnaires and scales addressing ‘problematic’ media use, such as excessive or so-called ‘addictive’ media use, were suitable substitutes for logged usage. There was even less of an association with usage logs to these measures.

Exhaustive literature survey

The research identified every existing study that compares logged or tracked media use measures with equivalent self-reports. Screening more than 12 000 articles for inclusion, they found 47 studies that included both types of measures. From here they were able to identify and extract 106 comparisons, based on 50 000 individuals, to address the question of how closely self-report estimates relate to logs of actual usage.

“These highly flawed studies are over-inflating the relationships between digital media use and typically negative outcomes, such as mental health symptoms and cognitive impairments, which of course explains the pervading view that smartphones among other technologies are bad for us,” commented Dr Brit Davidson from the University of Bath’s School of Management.

“Media and technology use takes the blame for everything from increases in teenage depression and suicide to higher incidence of Attention Deficit Hyperactivity Disorder (ADHD) and violence. If we want to properly investigate harms, we must first tackle assumptions about screen time and disentangle how people are actually using their phones or other technologies of interest.

“Importantly, these questionable studies are also being used to influence policy. The UK and Canada both have forms of screen time guidelines based on poorly conducted research, which is clearly worrying and hard to reverse.”

The researchers hope that the findings will prompt a change in how technology use is measured, as well as how society regards technology use, leading to a better understanding of our relationship with technology.

Source: News-Medical.Net

Journal information: Parry, D. A., et al. (2021) A systematic review and meta-analysis of discrepancies between logged and self-reported digital media use. Nature Human Behaviour. doi.org/10.1038/s41562-021-01117-5.

South African Perfume Expert’s Smell Recovery Breakthrough

A perfume bottle. Image by StockSnap from Pixabay

A South African perfume expert has developed a treatment to help people who have lost their sense of smell due to COVID.

Loss of smell and taste is one of the most prominent symptoms and after-effects of COVID infection. A meta-analysis of 27 studies showed that 48.47% of COVID patients reported loss of sense of smell, and loss of taste was reported in 20 studies with a prevalence of 41.47%.

While some people only experience a minimal loss of smell, others, especially those who have experienced prolonged COVID infection, may wait months for their sense of smell to return, if it all.

For those patients who battle with their sense of smell after recovering from COVID-19, it is a disheartening experience. Luckily Scenterprises Inc founder, Sue Phillips, has found an amazing way to help these patients smell all the wonderful things in life again.

Phillips is a renowned South African fragrance expert and a self-proclaimed ‘scentrepreneur’, with over 40 years’ experience in the fragrance industry. She is a vocal advocate for the amazing qualities of fragrances and is the author of a book, titled The Power of Perfume.

In an interview with Cape Talk, Phillips described her breakthrough discovery – the role perfume can play in helping those who have had COVID regain their sense of smell.

A perfume is made up of a complex blend of notes – the top, middle and base notes, explained Phillips. She said that she met with a woman who had lost her sense of smell for over a year due to COVID. The woman was unable to identify the lighter, or top notes of the perfume. However, the woman was able to pick up on the stronger notes.

“Suddenly we had a breakthrough and she was quite emotional. She finally said, and she was crying, ‘Oh my goodness, I can finally smell something beautiful’,” Phillips told Cape Talk.

Phillips observed that as they continue with the process, more and more fragrances can be identified by patients.

The perfume expert is now offering Zoom sessions educating people about this process and is producing ‘scent kits’ to help patients battling with their sense of smell.

Source: The South African

Doctor Receives Forbes Magazine Honour for COVID Discovery

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One of the first doctors to warn of COVID’s disproportionate effect  on ethnic minorities has been named on the Forbes 30 Under 30 list.

Dr Daniel Pan in Leicester, UK, was part of a group to treat the first cases in the city and noticed some of the sickest patients were minority ethnic.

The Forbes 30 Under 30 list celebrates young innovators in their respective fields, such as science and healthcare.

Dr Pan, who is a clinical fellow at the National Institute for Health Research (NIHR) at the University of Leicester, said: “It’s a great honour and I think the best thing about it is it helps advertise the research we’ve been doing, because it’s important work.”

He was one of the first to treat COVID patients in Leicester, and noticed the differences among the patients.

Dr Pan said: “Leicester has a very multi-ethnic diverse population so when the pandemic first hit the UK, I was working on the clinical wards.

“It became immediately clear to myself and my colleagues that a lot of these patients were from ethnic minority backgrounds – especially the ones who were very sick.

“We probably noticed that slightly earlier than a lot of other places, for example Italy, and we felt a need to get that out there.”

As part of a group of researchers led by Dr Manish Pareek, he contributed to work that demonstrated that COVID’s disproportionate impact on UK ethnic minority groups was largely a result of a greater risk of being infected, due to societal and health inequalities.

NIHR Leicester Biomedical Research Centre director Professor Melanie Davies remarked that Dr Pan had made a “significant contribution to research efforts”, adding he had “a bright future in clinical research ahead of him”.

He is now working alongside his colleagues on a face mask that could determine whether the wearer has COVID, and possibly how infectious they are.

Dr Pan said: “We can probably find out when a person is most infectious, because we can find the time of day and the period of their illness where they breathe out the most virus.

“If it’s effective it can be rolled out, for example, everyone in A&E could wear a mask while they’re waiting to see a doctor and those who are mask positive can then go into isolation bays.”

Source: BBC News

Hiking Prescribed for Elderly Man Coping with Lockdown

When Jim Snodgrass, 84, was expecting to receive medication to treat his anxiety, he instead was simply given the phone number for the Ramblers, a UK-based society of nature walkers and hikers.

Dr Victor Jack said that he recognised that Jim needed “social connection” and not medication. Hiking itself also has a number of proven physical and psychological health benefits. Some may be immediate, such as decreased blood pressure, decreased stress levels, enhanced immune system functioning, and restored attention, or else occur over time, such as weight loss, decreased depression, and overall wellness.

During the first COVID lockdown in March 2020, Jim was on his own since his wife Sheila died six years previously, said he suffered a breakdown.

The grandfather-of-two said: “I was not feeling good as I was bothered with my nerves so I called the doctor and that’s when I burst into tears on the phone to the receptionist.

“She was so nice to me and got the doctor to call me. I was surprised when he didn’t give me any pills and instead gave me the number for the Ramblers.”

During lockdown doctors could give exemptions to people who lived on their own to meet one other person outside. Then last summer people were allowed to meet in groups to walk.

Presently in the UK, groups of 15 people are allowed to meet outside.

He said: “The Ramblers saved me during the last year of lockdowns. I don’t know where I would be without them with my nerves. Within two miles of walking I’m a different person. Dr Jack is an amazing man as he has saved me from my nerves in the lockdowns with this idea of his.”

Jim has walked 6.4 to 8 kilometres a day in the last year.

He said: “I even went out when the roads were icy and always stayed within a five mile radius of South Queensferry during the lockdowns. I hope my story helps someone else who is feeling bad so they know to join their local Ramblers group too.”

Dr Jack, of South Queensferry Medical Practice, told BBC Scotland his own experience with stress was used to inform Jim’s treatment.

“When Jim told me he liked walking but that he had been walking on his own I was aware that he was actually quite socially isolated as his wife had died,” Dr Jack explained. “He was benefitting from the physical part of walking but not the social side. A few years ago I joined a running club and found it very helpful for stress. This has made me recognise that any sports club has a benefit particularly through the social connection it provides.”

Dr Jack said he had seen numerous patients experiencing mental health issues during the lockdown, especially in those working from home.

Brendan Paddy, director of Ramblers Scotland, said: “Jim is truly an inspiration to us all. It’s amazing to see how he’s improved his health and happiness by getting active with his local South Queensferry Ramblers group.

“Clearly lockdown has been a hugely challenging time, yet we know that many more people like Jim are discovering the revitalising power of walking – with booming numbers enjoying Scotland’s outdoors. I’d urge anyone who’d like a bit more adventure, friendship and fresh air in their lives, to give the Ramblers a go.”

Source: BBC News

Trump Encouraged to Urge Followers to Take Vaccine

As US polls show that half of Republicans voters are reluctant to get a COVID vaccine, two former senior Trump administration officials have said that former US President Donald Trump is being encouraged to urge his followers to get the jab. 

The officials stressed that herd immunity could be threatened by Republican vaccine hesitancy, and that Trump’s followers will listen to him and him alone.

“Vaccines are widely regarded as one of Trump’s greatest accomplishments, and Trump understands that this legacy is at risk because half of his supporters are not taking the vaccine,” one of the officials told CNN. “It’s just not clear yet if he understands that he’s the only one who can fix this.”

The other official concurred. “In Trump country, if you want to call it that, there are still significant numbers of people who aren’t sure [COVID] is a real thing, despite folks getting sick, and there are lots of suspicions about the vaccine,” the source said. “They have literally said to me, ‘I want to hear from the president about this.’ I don’t think they’re going to listen to anyone else.”

Trump told Fox News last week that he would make a “commercial” about the vaccine, but did not make a firm commitment.
However, a person close to Trump disagreed he should take this approach. “He shouldn’t be pushing these vaccines. His posse isn’t exactly vaccine-approving and it could backfire,” the person said.

All the living former presidents save for Trump, and their wives, appeared in an ad campaign started last month encouraging vaccination – though Trump’s team denied he was approached to participate. This was because the team that organised the PSA did not think it was likely he would participate, according to a source close to that project.

In the Fox interview, Trump said, “I encourage them to take it. I do,” referring to his supporters, but has only spoken out a few times about vaccination.

Fifty-four percent of Republicans are either hesitant about or opposed to getting a COVID vaccine, according to a March survey by the Kaiser Family Foundation, and 29% said they would not get a vaccine under any circumstances.

The number of people 18 and over with at least one vaccine dose, the top 10 states are all states President Joe Biden won last November. Trump won 9 out of the bottom 10 states for vaccination.

A third former Trump official confided that as early as last summer, there were already concerns over Republican vaccine refusal.

“On Facebook I saw a ton of hesitancy for that group — just insane amounts of hesitancy already and we knew it was just going to get worse,” the official said.

That official said Trump ally Michael Caputo briefly mentioned to Trump last fall that it would be good for the president to do a vaccine PSA after the election.

One of the other former officials noted that recently, Caputo “in particular has been active in discussing” the possibility of doing a PSA with the Trump team.

“Michael takes this very seriously and sees this as a big public health problem,” said the source. “His stepping out, because he’s so connected to the president, is really going to be forceful and incredibly helpful.”

Mr Caputo served as assistant secretary for public affairs at the US Department of Health and Human Services, leaving after being diagnosed with throat cancer and a rant at heath scientists saying they were undermining Trump.

Mr Caputo confirmed to CNN that he met with Trump and the two men “spoke about vaccine hesitancy and what can be done about it.”

Trump’s final year in office will define his legacy, according to historians, which was marred by the failure to contain COVID and his incitement of a mob that stormed the US Capitol.

The former  officials said they don’t want to see the vaccine development that Trump pushed undone by vaccine hesitancy, including among his own supporters.

“I see Operation Warp Speed tipping towards failure, and it really concerns me,” one of the senior officials warned. “If we don’t move half those people into the vaccinated column, we’re most likely not going to reach community immunity, and if we don’t reach it, then the president’s vaccine legacy is dead.”

The other senior official said Trump supporters would respond positively to the former president “taking ownership of Operation Warp Speed” and mentioning that he and his wife were both vaccinated.

“He could talk about how [vaccine uptake] is the way to get the country back to where it needs to be economically and socially, using his language that he uses with his supporters. I think that would be really powerful,” said the source.

Source: CNN

Woman Suffered ‘Excruciating’ Pain From Rare Gastrointestinal Condition

An undiagnosed, rare gastrointestinal condition left a 32-year old UK woman in “excruciating” pain for 16 months before a life-saving emergency operation.

In January 2020,  Rebecca Bostock started to experience stomach swelling and had difficult keeping her food down. After she was rushed into hospital on Good Friday this year, her mysterious illness was found to be Superior Mesenteric Artery Syndrome (SMAS).

“I don’t want anyone to go through what I went through,” she said.

Ms Bostock, 32, underwent an emergency operation at Gloucestershire Royal Hospital. Nurses there told her they had only treated three cases of SMAS in 27 years. She was also told that she likely survived because she had been rushed into hospital on that day.

“My stomach was swollen so much that I couldn’t breathe, I was being sick and couldn’t keep any medication down,” Ms Bestock said. “I was on a downward spiral. They took me into imaging and diagnosed SMAS and I was taken away for the operation. They said I needed the operation straight away or I wouldn’t survive even a couple more hours.”

Ms Bostock said she had been experiencing pain for 16 months, with stomach swelling, fever, sickness, diarrhoea and dizziness, and visited the GP and emergency departments several times. She was told there that the pain was likely to be caused by endometriosis or irritable bowel syndrome. 

“I was referred to a gynaecologist around the time of the first lockdown but everything shut down and I didn’t see one for months,” she said. “I was advised to change my diet, which seemed to help at first, but then the symptoms deteriorated again to the point where I struggled to walk and couldn’t breathe.”

SMAS is a rare disease, affecting some 0.1 to 0.3% of the population, and is defined as compression of the third portion of the duodenum between the abdominal aorta and the superior mesenteric artery. It is now mostly treated by laparoscopic duodenojejunostomy. The operation released the blockage, “re-plumbing” her stomach as the surgeon told her.

She is still unable to eat solid foods but hopes to introduce them to her diet soon and wants to raise awareness of the rare condition so that others can learn to spot the signs earlier.

“I want to tell my story to raise awareness I feel blessed and relieved,” she said. “I’m so thankful to the doctors and nurses who saved my life. I get so emotional thinking about it and I can’t thank them enough. It is so rare and even doctors don’t know about it, so helping people to spot the signs and be able to rule it out is so important.”

Source: BBC News

Wrangle Over GoFundMe For Family of Deceased Nurse

The family of a pregnant nurse who died with COVID have yet to receive any money from a GoFundMe campaign that names them as beneficiaries.

Mary Agyapong, 28, died after giving birth in April 2020 at Luton and Dunstable Hospital, where she worked. At 35 weeks pregnant, she was admitted to hospital April 5 after having collapsed with breathing difficulties, but was discharged the same day, despite her misgivings. She was readmitted two days later with COVID symptoms. She gave birth to a daughter by Caesarean section and was then transferred to intensive care on April 8, where she died four days later.

On April 15, family friend Rhoda Asiedu set up a GoFundMe page to support “Mary’s husband, and the couple’s children… during this heavy and trying time”, and has raised more than £186 000 (R3 720 000). This money had been placed into a trust, according to her lawyers.

Ms Agyapong’s widower said he found it “surprising” he had not been involved.

Coroner Emma Whitting, at an inquest held last month, said that it was “unclear” how mother-of-two Ms Agyapong contracted COVID before her death. She then urged Prime Minister Boris Johnson to begin a public inquiry into the pandemic.

The funds raised were paid to Ms Asiedu’s legal team, Blue Trinity, who said it had been placed “on trust” for the education of Ms Agyapong’s children and that 80% would be released when they turned 21. The remaining 20% would be provided to Ms Agyapong’s widower Ernest Boateng for “maintenance and upkeep” of the children, but he had “failed to co-operate with the trustees to arrange a schedule of maintenance”.
Blue Trinity however has not responded to requests from the BBC or Mr Boateng’s legal team to see the trust documents.

“I just try to keep my head above the water,” said Mr Boateng, who is studying law. “I find it very surprising that we have not been asked or involved with this GoFundMe money – it’s beyond my understanding.”

GoFundMe stated that it was clear from the outset that the money would be placed in a trust, adding: “Our records show the wording of the page has not been changed since it launched on 15 April 2020.”

However, an archived snapshot of the webpage on 16 April found by the BBC made no reference to a trust at all. When fundraiser Ms Asiedu was contacted by the BBC, she directed media requests to her legal team.

Source: BBC News