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The post Protected: Raising national awareness about child health and wellbeing appeared first on Health Awareness.

FOP turns patients’ muscles and tendons into bone and is often misdiagnosed. Know the signs and how to get more information on this rare, disabling condition.

Fibrodysplasia ossificans progressiva (FOP) is one of the rarest, most disabling conditions known to medicine. With only 1,000 confirmed cases worldwide, the disease exhibits no ethnic, racial or gender patterns. FOP causes bone to form in muscles, tendons and connective tissues. Eventually, these bridges of bone restrict movement and form a second skeleton, imprisoning the body.

Signs of FOP for clinical diagnosis

Telltale signs of FOP include:

• Bilateral deformity of the great toes (and thumbs in some individuals)
• Soft tissue swelling
• Progressive heterotopic ossification (HO)

The exact rate of progression for FOP is unpredictable and varies from person to person. However, it appears symptoms in the upper body are more prevalent in childhood. Lower body symptoms tend to present during adolescence.

While the initial diagnosis is clinical, a definitive FOP diagnosis requires genetic confirmation of the ACVR1 gene mutation. It’s important to note FOP is accelerated by trauma. This includes intramuscular injections and other procedures. If FOP is suspected, all elective procedures such as surgeries, biopsies and immunisations should be deferred. Patients should be referred to genetics and/or an FOP expert.

If FOP is suspected, all elective procedures
such as surgeries, biopsies and
immunisations should be deferred.

Treating FOP patients: supporting families

FOP patients need a primary physician who is willing to collaborate with FOP experts to assemble and coordinate a local care team. The International FOP Association (IFOPA) was formed in 1988 by a woman with FOP and can assist healthcare providers.

The IFOPA also offers healthcare professionals access to FOP Treatment Guidelines and Covid-19 resources essential for FOP patients who often have restricted lung capacity.

International network of FOP expertise

The International Clinical Council on FOP (ICC) is an autonomous and independent group of 21 internationally recognised physicians who are clinical experts in FOP from 14 nations and six continents. The ICC was established to coordinate and consolidate a global voice for the best practices for clinical care and clinical research for people who suffer from FOP.

The post Ultra-rare genetic disease often confused with cancer in children appeared first on Health Awareness.

A new parent-focused portal is launched to increase awareness of childhood myopia, what it really is and what you should be doing about it.

Myopia (short-sightedness) affects one in three people in the UK; however, it is now twice as common as in the 1960s. Of the 5 billion people globally predicted to be myopic by 2050, 1 billion will have ‘high myopia’, which can cause serious eye problems later in life including complications that could lead to blindness. The latest research highlights an association between screen time and the progression of myopia, with optometrists seeing a sharp rise in the number of children struggling to see the board at school.

Raising awareness among parents

The crisis has led Optometrist Jason Higginbotham to launch MyopiaFocus.org, a parent-focused education portal to raise awareness of the myopia epidemic, highlight the risks and treatment options and, ultimately, connect parents with local myopia management specialists.

For too long now, myopia has just been
dealt with by prescribing glasses.

Higginbotham says, “I’ve launched this campaign because I am concerned at the lack of understanding and support for what is going on with children’s eyes right now. Increased use of screens, close work and lack of outdoor time have been proven to have led to higher rates of myopia.”

Long-term management

“For too long now, myopia has just been dealt with by prescribing glasses. The problem is, this does nothing to control the increased risks of eye health problems associated with ‘axial-length myopia’ — caused when children’s eyeballs grow too long — and is known to account for the majority of all myopia. The good news is there are myopia management treatments available — unfortunately, not enough parents know about them,” Higginbotham continues.

 “We want to highlight the urgent need for proactive myopia management. A personalised care plan can significantly decrease the progression of myopia in children by as much as 50%. As people are unaware that eye tests in schools are limited — unless parents act and have their child’s eyes tested — myopia may go undetected.”

He concludes: “If you or your child are myopic, visit your local optician and ask them about myopia management for your child.”

The post Why you shouldn’t just correct your child’s short-sightedness with glasses appeared first on Health Awareness.

Gulcin Gumus

Research and Policy Project Manager, Eurordis

Patient engagement is key. Young patients and their families involved in paediatric drug development contribute to faster and more efficient medicine development.

Patient engagement in the process of drug development can lead to active collaboration between developers, researchers, clinicians and patients who come together and share their knowledge and expertise throughout a medicine’s lifecycle. This stretches from driving research to co-creating regulatory protocols for health technology assessments and cost reimbursements.

Consider children in medicine development

Unfortunately, only a few patients are engaged in medicine development due to a lack of collaboration between patients and developers and geographical barriers, among other reasons. The reality is more dramatic when it comes to paediatric medicines, even though around 70% of rare diseases have a childhood onset.

Today, many medicines prescribed to children are being used ‘off-label,’ which means they may have not been tested specifically on children. This is mostly because the administration of drugs in the paediatric population is commonly and erroneously assumed. Most medicines exhibit different pharmacokinetics in children compared to adults, so we must ensure that the medicines developed are right for them.

Clinical trials for young people

It wasn’t until the European Union’s Paediatric Regulation came into force in 2007 that clinical trials with children started to become more widespread. But there’s still work to be done. The research infrastructure supporting the delivery of large clinical trials hasn’t been developed equally across Europe. Clinical trials are often delayed, and the rollout of medicines approved for children is painstakingly slow.

Today, many medicines prescribed to children are being used ‘off-label,’ which means they may have not been tested specifically on children.

Across Europe, 35 academic and 10 industry partners — including EURORDIS-Rare Diseases Europe — have joined forces and created the pan-European network ‘Conect4Children’ (C4C) to accelerate the development of innovative medicines for the entire paediatric population. EURORDIS aims to amplify the voices of children and young people living with a rare disease and bring their needs to the attention of researchers, clinicians and developers.

As part of this project, we have discussed the establishment of a framework for clinical trials. We have also launched educational videos for patients and parents about paediatric clinical research, and we have organised events empowering patient organisations.

Address young patients’ needs

Through C4C and other initiatives, we aim to create a common framework that enables structured, effective, meaningful, ethical and sustainable patient engagement — specifically for young patients, similar to that which already exists for adults.

Only by engaging the young population in medicines development can we safely provide them with treatments based on actual evidence, which address their specific needs.

The post Ensuring paediatric medicines are tailored to young people and children appeared first on Health Awareness.

Dolores Cvitičanin

Public Affairs Manager, Rare Diseases International (RDI)

There are over 300 million people living with a rare disease worldwide. Many rare diseases are present at birth, and an estimated 70% of rare genetic conditions start in childhood, making children a significant proportion of the global community of people living with a rare disease.

Rare diseases are often chronic, progressive, life-threatening, and highly debilitating. Their impact is felt throughout a lifetime and in every aspect of life by both children with a rare disease themselves and their families. 

Barriers children face 

The adoption of a UN General Assembly Resolution on ‘Addressing the Challenges of Persons Living with a Rare Disease and their Families’ on 16 December 2021 improved the visibility and recognition of the specific challenges faced by children and families impacted by rare diseases. The United Nations and its Member States recognised that children living with a rare disease encounter barriers to their education and multiple forms of discrimination, stigma and exclusion.  

When entering the school system, children with a rare disease often deal with a lack of awareness of rare diseases.

The right to health for all 

The UN Convention on the Rights of the Child affirms that access to health is a fundamental right — not a privilege. No child should be deprived of the highest attainable standard of physical and mental health, regardless of where they live. 

However, due to a lack of awareness, knowledge and expertise on rare diseases, children continue to struggle in getting an accurate and timely diagnosis and in accessing health and social services. In addition, families are at greater risk of impoverishment due to significant out-of-pocket expenses, disruption of work and reduction in income.  

Rare Disease International (RDI) is working with civil society groups across the globe to advocate for the World Health Organisation (WHO) to adopt a resolution on Universal Health Coverage (UHC) for all people living with rare diseases. 

Access to education and equal opportunities 

The global rare disease community encourages policymakers to tackle rare diseases, not solely as a health priority but also as a social justice issue that affects children’s access to education — which in turn leads to life-long negative consequences. 

When entering the school system, children with a rare disease often deal with a lack of awareness of rare diseases. They navigate schooling facilities and programmes that are not adapted to welcome learners with uncommon health conditions.  

As a global alliance, RDI increasingly engages UN agencies, including the United Nations Educational, Scientific and Cultural Organization (UNESCO) and the Office of the High Commissioner for Human Rights (OHCHR) to address the social challenges and barriers linked to going through life with a rare disease.  

The post Ensuring children with a rare disease are no longer left behind appeared first on Health Awareness.

Improving and expanding childhood vaccination against routine and new diseases is vital for our children’s health and global public health. 

Ever since the smallpox vaccine discovery over two centuries ago, vaccines have successfully worked to eradicate, eliminate or control many infectious diseases.  

Red alert for child health 

However, in the wake of the Covid-19 pandemic, global health organisations have sounded a ‘red alert’ for child health. Childhood vaccination rates around the world have dropped for the first time in 30 years, threatening decades of progress for child health. Worryingly, 25 million infants missed out on basic routine vaccines in 2021 alone, and most are ‘zero-dose children’ who did not receive a vital first vaccine dose against diphtheria, tetanus and pertussis.  

Teenage HPV vaccine rates drop   

Another fallout from the Covid-19 pandemic is the decrease in human papillomavirus (HPV) vaccination rates which protects teenage girls against cervical cancer. As a result, in over 100 countries that have introduced HPV vaccination to date, approximately 1.6 million girls missed out in 2020. Globally, only 13% of girls were vaccinated against HPV in 2020, falling from 15% in 2019. 

Childhood vaccination rates around the world have dropped for the first time in 30 years, threatening decades of progress for child health.

Improving child health 

Significant progress has been made in child health and child survival rates over the past three decades with the global under-five mortality rate decreasing by more than 60%. Childhood vaccination can nurture our success in preventing infectious diseases we now consider rare and controlled.  

We must urgently get routine childhood immunisations back on track to avoid unnecessary outbreaks of debilitating diseases like measles, polio and pertussis. Furthermore, we need to raise awareness of the benefits of maternal immunisation against pertussis, tetanus or influenza, which can provide early protection — not only for pregnant women but also their newborns during the vulnerable first hours and weeks of their lives.  

New and improved vaccines against viruses like RSV (respiratory syncytial virus) — a leading cause of infant hospitalisation and the most common cause of bronchiolitis and pneumonia in infants — along with vaccines against malaria, pneumonia and diarrhoea-causing diseases can also improve the health and wellbeing of children and their families.  

Lessons learned 

The Covid-19 pandemic showed us that when we work together, we can achieve amazing things. By continuing to invest in vaccine innovation while working with global health partners to ensure routine immunisation programmes get back on track, encourage life course immunisation and equitable access to vaccines, we can optimise the lifesaving and life-enhancing power of immunisation and protect the future of millions of children and their families. 

The post Improving child health around the world through immunisation appeared first on Health Awareness.

In the UK, 12 children and young people will be diagnosed with cancer every day with two of those young patients not surviving.

Cancer is caused by genetic changes within a cell that divides and causes uncontrollable growth.

Symptoms of childhood cancer can present in a variety of ways with the most common being sudden changes to vision, excessive bruising, headaches with early morning sickness and severe pain in joints. There are 12 main diagnostic groups, with leukaemia accounting for 30% of diagnoses, brain and spinal tumours for 20% and lymphomas for 11%.

Only 2% of national cancer research
funding is spent on children.

Childhood cancer vs adult cancer

Treatment options for adults and children, at times, share similarities. With some exceptions, children tend to respond better because it can be more intense, and they generally have fewer pre-existing health issues. However, due to their growing bodies, it can be expected that two in three childhood cancer survivors will go on to experience long-term side effects from treatment such as heart failure, mobility issues, deafness, growth issues and infertility. Only 2% of national cancer research funding is spent on children.

Treatment innovations: CAR-T

Chimeric antigen receptor T-cell therapy (CAR-T) — a form of immunotherapy — is a relatively new treatment which has revolutionised care for children. As a targeted therapy, immunotherapy teaches the immune system to recognise and fight cancerous cells by itself, reducing the need for exposure to toxic treatments. Pioneering research, funded by Children with Cancer UK, demonstrated that by genetically modifying immune cells and injecting them back into the immune system, children were in improved clinical remission in comparison to chemotherapy treatment.

Today, experts are improving on this immunotherapy discovery. They hope to remove the difficulty for young children who have already gone through gruelling treatments by offering a less harsh process. They hope to be ready for clinical trials in three years.

Looking forwards

Fifty years ago, 75% of children with cancer died; today, more than 84% of children diagnosed with cancer survive their disease for five years or more.

Unfortunately, cancer remains one of the leading causes of death for under-15s which is why researchers and charities continue to work for higher survival rates, identification of genetic causes and limiting the number of long-term side effects for young patients.

The post Thousands of UK children and young people diagnosed with cancer every year appeared first on Health Awareness.

It’s easy to feel overwhelmed when caring for your child’s teeth. The good news is that a healthy smile is achievable for every child by following just a few, simple steps.

Whether it’s their first tooth or first trip to the dentist, a child’s early experiences of looking after their mouth can be with them for the rest of their life. Giving them a great start to life, as far as their teeth are concerned, is relatively simple.

Brushing a child’s teeth

Brushing is one of the most important skills a child can learn. In their early years, they will need a helping hand to clean their little gnashers. When the first teeth start to come through, use a children’s toothbrush with a small smear of children’s fluoride toothpaste. The amount of fluoride it should contain is 1,000 ppm for under-3s and up to 1,350–1,500 ppm for over-3s.

Once all the teeth have come through, use a small-headed, soft toothbrush in small, circular movements; and try to concentrate on one section at a time. Make sure to brush the inside and outside of each tooth, as well as the biting surfaces — and don’t forget the gum line. Cleaning should become part of their daily routine and be done twice a day.

Still water and milk are the best drinks for any of us, especially good for young and developing bodies.

Dental visits

Take your child to the dentist as soon as the first tooth appears. Baby teeth are still important as they can impact how well their adult teeth come in. Trips to the dentist from an early age help the child get used to the sights, sounds and smells of the dental practice.

The earlier and more regularly you take them to the dentist, the less likely they will have anxiety or fear of the dentist as they grow older.

Healthy, balanced diet

Nutrition plays a critical role in how a child grows and develops — this includes the health of their mouth. During snack time, get them used to having pieces of fresh fruit and raw vegetables. Any sweet foods should be limited and only allowed at mealtimes.

Still water and milk are the best drinks for any of us, especially good for young and developing bodies. Sugary drinks should be avoided, including fruit juices. Parents must also avoid getting into the habit of giving children sweets to reward them for good behaviour. The long-term effect of frequent sugar consumption can be very damaging to a child’s oral health, so help them avoid it as often as possible.

The post How to take care of your children’s teeth appeared first on Health Awareness.