| ‘Palliative care gave me hope when there was none’

In most cases parents aren’t prepared to handle the emotional, physical or financial shock of having to deal with a child suffering from a terminal disease. 

Many children suffer from life threatening illnesses – a situation that also has a huge impact on their families. Parents often struggle to cope with the financial burden and providing the emotional support these patients require.

Paedspal consults with about 25 new and existing patients weekly, and will reach nearly 300 patients by the end of the year.

An array of services

South Africa released its first national palliative care policy, developed by the National Department of Health together with palliative care experts.

In the Western Cape, parents have the support of Paedspal, a public-private programme that assists and supports children living with terminal illnesses. They offer an array of services ranging from aromatherapy massages to family counselling sessions with the strong support of three doctors, a social worker and several nurses.

Health24 previously reported on 11-year-old Naaziyah Manuel who passed away from ovarian cancer. Her mother, Zerina Amien spoke to us about the support Paedspal offered both Naaziya and the family.

Not only did Paedspal offer emotional support, they also gave both mother and daughter the opportunity to relax and destress with aromatherapy massages.

She also explained that all counselling sessions between patients were confidential.

“Conversations between Naaziya and them [Paedspal] were confidential, as were the conversations we had with them.”

A rare medical condition

Together with Paedspal, a palliative network called PatchSA (Palliative Treatment and Care for Children of South Africa) within SA is an inclusive network that offers advice, tools and opportunities to both patients and their families or caregivers.

palliative care,huyaam,patchsa,paedspalSpeaking to PatchSA Ambassador and Palliative Care Advocate, Huyaam Samuels explains her struggle living with a rare medical condition called Pseudoachondroplasia and Hypermobility Syndrome. This condition causes severe chronic pain throughout her body with muscle spasms – but doctors couldn’t pick up what was wrong.

‘They gave me hope’

After receiving tireless help and support from Dr Meiring, CEO and Paedspal Paediatrician, and the team of doctors, Samuels found new hope.

“Living with a rare medical condition, doctors failed to believe the pain I was in or take me seriously.

“Palliative care has given me hope when there was none. They improved the quality of life for both my family and me.”

Their work is mostly done through their website and social media platforms as they aren’t  always able to engage with patients on a one-to-one basis. 

The Science Of Safer Pregnancy: How Mini ‘Placentas On A Chip’ May Help Us Understand Pre-eclampsia

The placenta may be the most important organ in a body – it gives life to us all – and yet it is probably the least-studied organ.

The placenta is the gatekeeper for a foetus, allowing a mother’s nutrients to pass in one direction while waste passes back into the mother’s bloodstream. It produces hormones to encourage foetal growth and offers protection against most bacteria, although not against viruses.

But, when the placenta fails to function normally, it can put the health and life of both foetus and mother at serious risk, leading to hundreds of thousands of deaths every year. Among the biggest such problems is pre-eclampsia, which kills half a million babies and around 76,000 mothers every year globally.


The condition affects up to 5 per cent of all pregnancies – Kim Kardashian recently suffered both pre-eclampsia and placenta accreta, another dangerous condition in which the placenta grows too deeply into the wall of the uterus.

Even when babies survive pre-eclampsia, they can suffer from growth restriction or other health problems, including brain and heart defects, and diabetes, later in life. Growth restriction is the most common factor in still-births, when there are insufficient placental blood vessels to keep the foetus nourished.

And how do we treat this killer condition? The tools we have are no more advanced than aspirin, and premature deliveries.

Aspirin is our frontline tool but is effective only if taken early in pregnancy. Other drugs combat symptoms, such as lowering blood pressure.

Ultimately, our only prevention is to induce premature delivery.

Research into the placenta is desperately needed, which is why my team at Aston Medical School is developing a radical new way of carrying out tests on the organ.

The Aston University team will collaborate with engineers from a Dutch company, Mimetas, developing a method of growing human placentas on a ‘chip’ – we call it iPlacenta. The placentas are grown from cells harvested from umbilical cords, and so treatments can be tested without any risk to either mothers or foetuses.

These chips, which are about the size of a mobile phone, will hold up to 48 miniature placentas, each one of which can be an individual experiment. The chips can be slotted into existing equipment to make analysis both relatively easy and inexpensive.

The tiny placentas can also mimic the organ’s diseased state, hopefully allowing us an insight into how pre-eclampsia develops, so the condition can ultimately be identified and treated early.

This new research may be groundbreaking – even growing a single placenta would be an achievement – but it’s only one of three approaches we are taking at Aston. We’re also working on ultrasound techniques, with Samsung and FUJIFILM VisualSonics, to better understand the placenta and help us identify those most at risk.

And we’re also teaming up with mathematicians at the University of Rostock in Germany to build a huge computer model to help us understand pre-eclampsia. Ultimately, our ambition is to be able to use this model to predict outcomes for individual patients, and to help us build experiments for our iPlacenta chips.

The Aston research I coordinate is backed by €4million funding from the EU’s Horizon 2020 research and innovation programme, and will involve experts in ten different centres feeding information into our programme. We are based at the UK’s newest medical school, at Aston University, which is headed up by Professor Asif Ahmed, a worldwide authority on pre-eclampsia.

Our research is really only just beginning and, as well as bringing health benefits, we hope that eventually our work will save the health service money – a lot of money.

It has been estimated that premature births cost the NHS almost £1billion a year, and that delaying premature births by just one week could save the NHS £260million a year – that’s because premature babies tend to need the highest levels of care.

But, as important as the financial costs are, it’s the human costs that are most significant. Kim Kardashian has been candid about the suffering pre-eclampsia and placenta accreta caused her, and she has access to the finest medical teams.

Tens of millions of other mothers around the world are not so lucky, which is why we need to be able to identify these conditions and treat them long before they become life-threatening and require major medical intervention.

This is, literally, a matter of life and death – for both mothers, and for babies who have barely started their lives. | Type 1 diabetes linked to coeliac disease

Type 1 diabetes is an autoimmune disease that causes the body’s immune system to mistakenly attack the insulin-producing cells in the pancreas, according to the American Diabetes Association.

Parents of young children with type 1 diabetes need to be on the lookout for symptoms of another autoimmune condition – coeliac disease, new research suggests.

The study found these youngsters appear to face a nearly tripled risk of developing coeliac disease autoantibodies, which eventually can lead to the disorder, which is chronic and causes an intolerance to gluten, which damages the small intestinal lining. The severity of symptoms differs from person to person.

Genetically related

“Type 1 diabetes and coeliac disease are closely related genetically,” explained study author Dr William Hagopian.

“People with one disease tend to get the other. People who have type 1 diabetes autoantibodies should get screened for coeliac autoantibodies,” Hagopian said. He directs the diabetes programme at the Pacific Northwest Research Institute in Seattle.

Insulin is a hormone that helps to usher the sugar from foods into the body’s cells to be used as fuel. Because the autoimmune attack leaves people with type 1 diabetes without enough insulin, they must replace the lost insulin through injections or an insulin pump with a temporary tube inserted under the skin.

Coeliac disease is an autoimmune disease that causes the immune system to attack the lining of the small intestine when gluten is consumed, according to the Coeliac Disease Foundation. Gluten is a protein found in wheat. Symptoms of coeliac disease include stomach pain and bloating, diarrhea, vomiting, constipation, weight loss, fatigue and delayed growth and puberty.

Early diagnosis important

Dr James Grendell is chief of the division of gastroenterology at NYU Winthrop Hospital in Mineola, New York. He explained why knowing ahead of time that coeliac may be developing can be helpful.

“Early diagnosis of coeliac disease is important to initiate treatment with a gluten-free diet to prevent complications, particularly growth retardation in children,” he said.

“Other significant complications include iron-deficiency anemia, osteoporosis and a form of skin rash. Less common, but potentially lethal, complications include lymphoma and carcinoma of the small intestine,” Grendell added.

Treatment for the disease involves not ingesting anything containing gluten.

According to Hagopian, “Coeliac is about three times more common in the general population than type 1 diabetes.”

Previous research has pegged the co-occurrence of type 1 diabetes and coeliac disease at around 5% to 8%, the study authors said.

What the research entailed 

To get a better idea of when these diseases start to occur together, as well as what might trigger them, the researchers looked at data from a prospective study of children with a high genetic risk of developing type 1 diabetes. The primary aim of the study was to find environmental causes of type 1 diabetes.

The research included almost 6 000 youngsters from six US and European medical centers. The participants all had the necessary autoantibody testing. The median follow-up time was 66 months (5.5 years), the study said.

Autoantibodies linked to type 1 diabetes were found in 367 children, according to the report. Autoantibodies linked to coeliac disease were found in 808 youngsters. Autoantibodies associated with both conditions were found in 90 children.

Autoantibodies for type 1 diabetes typically appeared before those for coeliac disease, the study authors noted.

Association but not causation

That doesn’t necessarily mean that type 1 diabetes caused the development of coeliac autoantibodies, said Dr Christine Ferrara, an adjunct assistant professor at the University of California, San Francisco. She co-authored an editorial that accompanied the study.

“The results of this paper demonstrate an association, but do not establish causation,” Ferrara said.

The findings were published online in the journal Pediatrics.

Hagopian said it’s possible that type 1 diabetes may somehow trigger coeliac disease. But it could also be an overlapping environmental factor that starts the disease process in both cases, he added.

Immune system needs to be regulated

Ferrara explained that “people need to recognise that regulation of the immune system underlies multiple disease processes.”

Hagopian said it’s important to note that the study only looked at children under six.

Grendell agreed with Hagopian that a diagnosis of type 1 should signal the need to look for coeliac disease.

“The take-home message for the public is that type 1 diabetes mellitus appears to be a risk factor for the development of coeliac disease and, as already recommended, patients [usually children] diagnosed with type 1 diabetes mellitus should be screened for this highly treatable disease,” he said.

Image credit: iStock

Call Security! Cyber Defence Lags Behind In Retail

It’s a familiar sight – the uniformed security guard patrolling the store on the lookout for shoplifters, ready to spring into action to stop thieves from getting away with the goods. Retailers have long known the value of proactive security to prevent loss and act as a deterrent in the real world. However, it seems that in the virtual world the retail security guard is out of shape, unable to keep up with the almost continuous threat of cyberattack. In a recent A10 Networks global survey 29% of participants felt that the retail sector is the least prepared to respond to cyberattacks. This was far higher than sectors such as finance and government. Why is retail so vulnerable and what are the challenges to overcome so that customers can shop in safety?

Sale of the century for cybercriminals

The retail sector is a seductive target for cybercriminals. High transaction volumes, including spikes at predictable times such as the holiday season and Black Friday, offer plenty of opportunities for fraudsters to get in amongst legitimate purchasers and make a profit. Beyond direct fraud, the vast quantity of customer data collected by retailers is of immense value to cybercriminals, who offer it for sale on the deep and dark web. The sector is also a target for hacktivists looking for notoriety; bringing down a major retailer’s site with a DDoS attack over the holiday season will certainly make you famous.

Attacks on the retail sector are on the rise. PWC recently found that attacks globally were up by 30% year on year and the number of serious data breaches in retail firms reported to the UK Information Commissioner’s Office (ICO) has doubled. In a climate where customers are increasingly aware of the importance of privacy and the risks of identity theft, this statistic is a big problem for retailers. A report by MediaPro found that 84 percent of shoppers would change their shopping habits if a retailer experienced a cyberattack, with 49 percent saying that they would be unlikely to buy from that retailer in future. In the fast-paced world of online retail, this reputational damage can cost millions. On top of this, the implementation of the GDPR in 2018 is going to make the financial consequences of data losses far heavier, with organisations facing fines of up to 4% of annual turnover should their management of customer data be found to be in breach.

Key challenges for retail

Retailers have an enormous incentive to gather customer data to drive sales and marketing programmes. They are less heavily regulated than sectors such as finance or government so the drive to put data security first is not so strong. However, as they respond to competitive pressure to develop multichannel shopping experiences and offer customer-enticing loyalty schemes, so they also create more potential points of attack and opportunities for cybercriminals to take advantage. Evidence suggests that security systems are not evolving alongside retail innovations, with only 58% of retailers reporting that they have an overall security strategy in place. This needs to improve if the sector is to protect itself from cyberattacks of increasing frequency and sophistication. As they take advantage of the efficiencies and scalability of cloud and other technologies, retailers need to be confident that their systems can detect and neutralise malicious activity and protect customer data as it is transferred around the organisation.

Another challenge lies in the fact that retail is staff-intensive. People can be security’s best asset or its biggest weakness, but in the UK government’s 2017 cyber security breaches survey, only 33% of retail executives believed that core staff took security seriously. This figure compared with 63% in the finance industry – perhaps an indication of the stringent regulations governing that sector. Staff turnover in retail is generally higher than in other industries, so it can be a challenge to keep on top of educating staff about their security responsibilities, but it’s not something that can be shirked as the consequences of poor practices can be severe.

Retail is an important part of everyday life and customers value ease of use and convenience very highly. But they also value their private information. If retailers are going to continue to be trusted by their customers, they need to get their security guards up to scratch in the virtual world as well as in the real one.

Sun Setting On ‘Renewables And Reliability Argument’

In April this year, the UK went its first full day without the use of energy from coal since the Industrial Revolution. As the first country to use coal for electricity, this is a watershed moment for the low carbon revolution. In fact, the UK energy supply was only 2% from coal in the first half of 2017, down from some 40% of total supply just 5 years ago.

As a result of rapidly falling costs of solar and wind power, and in response to meeting emissions reductions targets, there has been significant increase in investment into renewable energy and phasing out of coal based power stations in the UK. The effect of this structural change is also in evidence when National Grid reported that at lunchtime on the 7th June 2017, for the first time in excess of 50% of the UK’s electricity needs were met by power from wind, solar, hydro and wood pellets. With the addition of nuclear, at 2pm this reached 72.1% from carbon neutral generation.

The price of renewables continues to fall due to improved technology and uptake – solar and wind is now either the same price or cheaper than new fossil fuel capacity in more than 30 countries, according to a report from the World Economic Forum released earlier this year. However, the rapid adoption of these new technologies is causing concerns in some quarters.

One major argument used against renewables is that they do not produce a consistent base-load type of power like fossil fuels due to being intermittent – not generating power when the wind is not blowing or sun not shining. However, this is being answered by rapid improvements in battery storage systems and an increasingly flexible grid. Battery system costs are dropping fast, which means that power generated from the sun and wind can be stored for future use, which dramatically reduces the need for base-load generation.

The Storage Holy Grail
Improved battery technology and lower costs has been mainly driven by the rapidly growing electric vehicle (EV) market. The costs of Lithium Ion battery packs have dropped by 90% in 10 years, which is now creating a timely opportunity to increase the use of renewable energy, and strengthen the current power grid. This is also enabling both industrial users and consumers to gain better control over their energy usage and power bills.

The benefits of battery-based storage systems are multiple. Battery storage systems can provide greater grid stability, and also enable power generators of many types to maximise revenue and minimise costs. Behind the meter, on the demand side, users can better control bills and optimise local renewable power consumption. In addition, battery storage systems allow for more resilient power for the rare cases where the grid fails such as when there are natural disasters such as the flooding seen in recent years in the UK and other places.

On a larger scale, battery systems are generating revenue by providing ancillary services to the grid transmission systems. Such markets are expected to grow for smaller systems in aggregate in coming years. Another exciting development that storage enables is microgrids. Here, local, distributed power generation and storage can allow portions of the grid and critical facilities to operate independently of the larger national grid when necessary, helping reduce the overall potential for unforeseen blackouts. These microgrids – whether large or small – ensure resiliency and stability of supply and a reduction of CO2 emissions.

The car and home as energy providers
In its first major move to support the nascent battery revolution, the UK government announced in June 2017 that it is poised to invest £246m in battery technology, and that it will be a key pillar in its industrial strategy.

These recent announcements in support of battery technologies are welcome. What is now expected and needed is more transparency and the removal of barriers to allow small systems to participate in the ancillary services markets. Doing so would also foster the growth of the local ecosystems that will help to achieve the transformation of the energy markets and modernise the grid. For example, people with EV cars will eventually also let them provide power back to the grid and thus offset the cost of the cars.

Overall, the long-lasting argument that renewables are unreliable is short lived. With so many advancements within the renewable energy sector coming to head, the ‘sun not shining at night’ and “wind does not always blow” concerns are rapidly becoming obsolete. As costs continue to drop, and battery system and ancillary services continue to expand, there is a huge opportunity for complete structural changes within the energy sector. And with supportive regulation changes and increased transparency for markets, the future is certainly bright for UK’s energy supply moving forward.