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What is childhood dementia? And how could new research help?
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“Childhood” and “dementia” are two words we wish we didn’t have to use together. But sadly, around 1,400 Australian children and young people live with currently untreatable childhood dementia.
Broadly speaking, childhood dementia is caused by any one of more than 100 rare genetic disorders. Although the causes differ from dementia acquired later in life, the progressive nature of the illness is the same.
Half of infants and children diagnosed with childhood dementia will not reach their tenth birthday, and most will die before turning 18.
Yet this devastating condition has lacked awareness, and importantly, the research attention needed to work towards treatments and a cure.
More about the causes
Most types of childhood dementia are caused by mutations (or mistakes) in our DNA. These mistakes lead to a range of rare genetic disorders, which in turn cause childhood dementia.
Two-thirds of childhood dementia disorders are caused by “inborn errors of metabolism”. This means the metabolic pathways involved in the breakdown of carbohydrates, lipids, fatty acids and proteins in the body fail.
As a result, nerve pathways fail to function, neurons (nerve cells that send messages around the body) die, and progressive cognitive decline occurs.
What happens to children with childhood dementia?
Most children initially appear unaffected. But after a period of apparently normal development, children with childhood dementia progressively lose all previously acquired skills and abilities, such as talking, walking, learning, remembering and reasoning.
Childhood dementia also leads to significant changes in behaviour, such as aggression and hyperactivity. Severe sleep disturbance is common and vision and hearing can also be affected. Many children have seizures.
The age when symptoms start can vary, depending partly on the particular genetic disorder causing the dementia, but the average is around two years old. The symptoms are caused by significant, progressive brain damage.
Are there any treatments available?
Childhood dementia treatments currently under evaluation or approved are for a very limited number of disorders, and are only available in some parts of the world. These include gene replacement, gene-modified cell therapy and protein or enzyme replacement therapy. Enzyme replacement therapy is available in Australia for one form of childhood dementia. These therapies attempt to “fix” the problems causing the disease, and have shown promising results.
Other experimental therapies include ones that target faulty protein production or reduce inflammation in the brain.
Research attention is lacking
Death rates for Australian children with cancer nearly halved between 1997 and 2017 thanks to research that has enabled the development of multiple treatments. But over recent decades, nothing has changed for children with dementia.
In 2017–2023, research for childhood cancer received over four times more funding per patient compared to funding for childhood dementia. This is despite childhood dementia causing a similar number of deaths each year as childhood cancer.
The success for childhood cancer sufferers in recent decades demonstrates how adequately funding medical research can lead to improvements in patient outcomes.
Another bottleneck for childhood dementia patients in Australia is the lack of access to clinical trials. An analysis published in March this year showed that in December 2023, only two clinical trials were recruiting patients with childhood dementia in Australia.
Worldwide however, 54 trials were recruiting, meaning Australian patients and their families are left watching patients in other parts of the world receive potentially lifesaving treatments, with no recourse themselves.
That said, we’ve seen a slowing in the establishment of clinical trials for childhood dementia across the world in recent years.
In addition, we know from consultation with families that current care and support systems are not meeting the needs of children with dementia and their families.
New research
Recently, we were awarded new funding for our research on childhood dementia. This will help us continue and expand studies that seek to develop lifesaving treatments.
More broadly, we need to see increased funding in Australia and around the world for research to develop and translate treatments for the broad spectrum of childhood dementia conditions.
Dr Kristina Elvidge, head of research at the Childhood Dementia Initiative, and Megan Maack, director and CEO, contributed to this article.
Kim Hemsley, Head, Childhood Dementia Research Group, Flinders Health and Medical Research Institute, College of Medicine and Public Health, Flinders University; Nicholas Smith, Head, Paediatric Neurodegenerative Diseases Research Group, University of Adelaide, and Siti Mubarokah, Research Associate, Childhood Dementia Research Group, Flinders Health and Medical Research Institute, College of Medicine and Public Health, Flinders University
This article is republished from The Conversation under a Creative Commons license. Read the original article.
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Getting Flexible, Starting As An Adult: How Long Does It Really Take?
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Aleks Brzezinska didn’t start stretching until she was 21, and here’s what she found:
We’ll not stretch the truth
A lot of stretching programs will claim “do the splits in 30 days” or similar, and while this may occasionally be true, usually it’ll take longer.
Brzezinska started stretching seriously when she was 21, and made significant flexibility gains between the ages of 21 and 23 with consistent practice. Since then, she’s just maintained her flexibility.
There are facts that affect progress significantly, such as:
- Anatomy: body structure, age, and joint flexibility do influence flexibility; starting younger and/or having hypermobile joints does make it easier.
- Consistency: regular practice (2–3 times a week) is crucial, but avoid overdoing it, especially when sore.
- Lifestyle: weightlifting, running, and similar activities can tighten muscles, making flexibility harder to achieve.
- Hydration: staying hydrated is important for muscle flexibility.
She also recommends incorporating a variety of different stretching types, rather than just one method, for example passive stretching, active stretching, Proprioceptive Neuromuscular Facilitation (PNF) stretching, and mobility work.
For more on each of these, enjoy:
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Jasmine McDonald’s Ballet Stretching Routine
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The Joy of Saying No – by Natalie Lue
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Superficially, this seems an odd topic for an entire book. “Just say no”, after all, surely! But it’s not so simple as that, is it?
Lue looks into what underpins people-pleasing, first. Then, she breaks it down into five distinct styles of people-pleasing that each come from slightly different motivations and ways of perceiving how we interact with those around us.
Lest this seem overly complicated, those five styles are what she calls: gooding, efforting, avoiding, saving, suffering.
She then looks out how to have a healthier relationship with our yes/no decisions; first by observing, then by creating healthy boundaries. “Healthy” is key here; this isn’t about being a jerk to everyone! Quite the contrary, it involves being honest about what we can and cannot reasonably take on.
The last section is about improving and troubleshooting this process, and constitutes a lot of the greatest value of the book, since this is where people tend to err the most.
Bottom line: this book is informative, clear, and helpful. And far from disappointing everyone with “no”, we can learn to really de-stress our relationships with others—and ourselves.
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Tinnitus: Quieting The Unwanted Orchestra In Your Ears
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Tinnitus—When a “minor” symptom becomes disruptive
Tinnitus (typically: ringing in the ears) is often thought of less as a condition in and of itself, and more a symptom related to other hearing-related conditions. Paradoxically, it can be associated with hearing loss as well as with hyperacusis (hearing supersensitivity, which sounds like a superpower, but can be quite a problem too).
More than just ringing
Tinnitus can manifest not just as ringing, but also as whistling, hissing, pulsing, buzzing, hooting, and more.
For those who don’t suffer from this, it can seem very trivial; for those who do… Sometimes it can seem trivial too!
But sometimes it’s hard to carry on a conversation when at random moments it suddenly sounds like someone is playing a slide-whistle directly into your earhole, or like maybe a fly got stuck in there.
It’s distracting, to say the least.
What causes it?
First let’s note, tinnitus can be acute or chronic. So, some of these things may just cause tinnitus for a while, whereas some may give you tinnitus for life. In some cases, it depends on how long the thing in question persisted for.
A lot of things can cause it, but common causes include:
- Noise exposure (e.g. concerts, some kinds of industrial work, war)
- High blood pressure
- Head/neck injuries
- Ear infection
- Autoimmune diseases (e.g. Type 1 Diabetes, Lupus, Multiple Sclerosis)
So what can be done about it?
Different remedies will work (or not) for different people, depending on the cause and type of tinnitus.
Be warned also: some things that will work for one person’s tinnitus will make another person’s worse, so you might need to try a degree of experimentation and some of it might not be fun!
That in mind, here are some things you might want to try if you haven’t already:
- Earplugs or noise-canceling headphones—while tinnitus is an internal sound, not external, it often has to do with some part(s) of your ears being unduly sensitive, so giving them less stimulus may ease the tinnitus that occurs in reaction to external noise.
- A great option (that this writer uses personally and considers a life-changer) is silicon earplugs that live in a little case on a keyring when not in use—no more heart-racing fleeing from supermarket checkout boops or pedestrian crossing bips or traffic noises or babies crying or (etc)
- White noise—if you also have hyperacusis, a lower frequency range will probably not hurt the way a higher range might. If you don’t also have hyperacusis, you have more options here and this is a popular remedy. Either way, white noise outperforms “relaxing” soundscapes.
- Hearing aids—counterintuitively, for some people whose tinnitus has developed in response to hearing loss, hearing aids can help bring things “back to normal” and eliminate tinnitus in the process.
- Customized sound machines—if you have the resources to get fancy, science currently finds this to be best of all. They work like white noise, but are tailored to your specific tinnitus.
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If You’re Poor, Fertility Treatment Can Be Out of Reach
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Mary Delgado’s first pregnancy went according to plan, but when she tried to get pregnant again seven years later, nothing happened. After 10 months, Delgado, now 34, and her partner, Joaquin Rodriguez, went to see an OB-GYN. Tests showed she had endometriosis, which was interfering with conception. Delgado’s only option, the doctor said, was in vitro fertilization.
“When she told me that, she broke me inside,” Delgado said, “because I knew it was so expensive.”
Delgado, who lives in New York City, is enrolled in Medicaid, the federal-state health program for low-income and disabled people. The roughly $20,000 price tag for a round of IVF would be a financial stretch for lots of people, but for someone on Medicaid — for which the maximum annual income for a two-person household in New York is just over $26,000 — the treatment can be unattainable.
Expansions of work-based insurance plans to cover fertility treatments, including free egg freezing and unlimited IVF cycles, are often touted by large companies as a boon for their employees. But people with lower incomes, often minorities, are more likely to be covered by Medicaid or skimpier commercial plans with no such coverage. That raises the question of whether medical assistance to create a family is only for the well-to-do or people with generous benefit packages.
“In American health care, they don’t want the poor people to reproduce,” Delgado said. She was caring full-time for their son, who was born with a rare genetic disorder that required several surgeries before he was 5. Her partner, who works for a company that maintains the city’s yellow cabs, has an individual plan through the state insurance marketplace, but it does not include fertility coverage.
Some medical experts whose patients have faced these issues say they can understand why people in Delgado’s situation think the system is stacked against them.
“It feels a little like that,” said Elizabeth Ginsburg, a professor of obstetrics and gynecology at Harvard Medical School who is president-elect of the American Society for Reproductive Medicine, a research and advocacy group.
Whether or not it’s intended, many say the inequity reflects poorly on the U.S.
“This is really sort of standing out as a sore thumb in a nation that would like to claim that it cares for the less fortunate and it seeks to do anything it can for them,” said Eli Adashi, a professor of medical science at Brown University and former president of the Society for Reproductive Endocrinologists.
Yet efforts to add coverage for fertility care to Medicaid face a lot of pushback, Ginsburg said.
Over the years, Barbara Collura, president and CEO of the advocacy group Resolve: The National Infertility Association, has heard many explanations for why it doesn’t make sense to cover fertility treatment for Medicaid recipients. Legislators have asked, “If they can’t pay for fertility treatment, do they have any idea how much it costs to raise a child?” she said.
“So right there, as a country we’re making judgments about who gets to have children,” Collura said.
The legacy of the eugenics movement of the early 20th century, when states passed laws that permitted poor, nonwhite, and disabled people to be sterilized against their will, lingers as well.
“As a reproductive justice person, I believe it’s a human right to have a child, and it’s a larger ethical issue to provide support,” said Regina Davis Moss, president and CEO of In Our Own Voice: National Black Women’s Reproductive Justice Agenda, an advocacy group.
But such coverage decisions — especially when the health care safety net is involved — sometimes require difficult choices, because resources are limited.
Even if state Medicaid programs wanted to cover fertility treatment, for instance, they would have to weigh the benefit against investing in other types of care, including maternity care, said Kate McEvoy, executive director of the National Association of Medicaid Directors. “There is a recognition about the primacy and urgency of maternity care,” she said.
Medicaid pays for about 40% of births in the United States. And since 2022, 46 states and the District of Columbia have elected to extend Medicaid postpartum coverage to 12 months, up from 60 days.
Fertility problems are relatively common, affecting roughly 10% of women and men of childbearing age, according to the National Institute of Child Health and Human Development.
Traditionally, a couple is considered infertile if they’ve been trying to get pregnant unsuccessfully for 12 months. Last year, the ASRM broadened the definition of infertility to incorporate would-be parents beyond heterosexual couples, including people who can’t get pregnant for medical, sexual, or other reasons, as well as those who need medical interventions such as donor eggs or sperm to get pregnant.
The World Health Organization defined infertility as a disease of the reproductive system characterized by failing to get pregnant after a year of unprotected intercourse. It terms the high cost of fertility treatment a major equity issue and has called for better policies and public financing to improve access.
No matter how the condition is defined, private health plans often decline to cover fertility treatments because they don’t consider them “medically necessary.” Twenty states and Washington, D.C., have laws requiring health plans to provide some fertility coverage, but those laws vary greatly and apply only to companies whose plans are regulated by the state.
In recent years, many companies have begun offering fertility treatment in a bid to recruit and retain top-notch talent. In 2023, 45% of companies with 500 or more workers covered IVF and/or drug therapy, according to the benefits consultant Mercer.
But that doesn’t help people on Medicaid. Only two states’ Medicaid programs provide any fertility treatment: New York covers some oral ovulation-enhancing medications, and Illinois covers costs for fertility preservation, to freeze the eggs or sperm of people who need medical treatment that will likely make them infertile, such as for cancer. Several other states also are considering adding fertility preservation services.
In Delgado’s case, Medicaid covered the tests to diagnose her endometriosis, but nothing more. She was searching the internet for fertility treatment options when she came upon a clinic group called CNY Fertility that seemed significantly less expensive than other clinics, and also offered in-house financing. Based in Syracuse, New York, the company has a handful of clinics in upstate New York cities and four other U.S. locations.
Though Delgado and her partner had to travel more than 300 miles round trip to Albany for the procedures, the savings made it worthwhile. They were able do an entire IVF cycle, including medications, egg retrieval, genetic testing, and transferring the egg to her uterus, for $14,000. To pay for it, they took $7,000 of the cash they’d been saving to buy a home and financed the other half through the fertility clinic.
She got pregnant on the first try, and their daughter, Emiliana, is now almost a year old.
Delgado doesn’t resent people with more resources or better insurance coverage, but she wishes the system were more equitable.
“I have a medical problem,” she said. “It’s not like I did IVF because I wanted to choose the gender.”
One reason CNY is less expensive than other clinics is simply that the privately owned company chooses to charge less, said William Kiltz, its vice president of marketing and business development. Since the company’s beginning in 1997, it has become a large practice with a large volume of IVF cycles, which helps keep prices low.
At this point, more than half its clients come from out of state, and many earn significantly less than a typical patient at another clinic. Twenty percent earn less than $50,000, and “we treat a good number who are on Medicaid,” Kiltz said.
Now that their son, Joaquin, is settled in a good school, Delgado has started working for an agency that provides home health services. After putting in 30 hours a week for 90 days, she’ll be eligible for health insurance.
One of the benefits: fertility coverage.
KFF Health News is a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF—an independent source of health policy research, polling, and journalism. Learn more about KFF.
Subscribe to KFF Health News’ free Morning Briefing.
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Black Beans vs Pinto Beans – Which is Healthier?
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Our Verdict
When comparing black beans to pinto beans, we picked the pinto beans.
Why?
Both of these beans have won all their previous comparisons, so it’s no surprise that this one was very close. Despite their different appearance, taste, and texture, their nutritional profiles are almost identical:
In terms of macros, pinto beans have a tiny bit more protein, carbs, and fiber. So, a nominal win for pinto beans, but again, the difference is very slight.
When it comes to vitamins, black beans have more of vitamins A, B1, B3, and B5, while pinto beans have more of vitamins B2, B6, B9, C, E, K and choline. Superficially, again this is nominally a win for pinto beans, but in most cases the differences are so slight as to be potentially the product of decimal place rounding.
In the category of minerals, black beans have more calcium, copper, iron, and phosphorus, while pinto beans have more magnesium, manganese, selenium, and zinc. That’s a 4:4 tie, but the only one with a meaningful margin of difference is selenium (of which pinto beans have 4x more), so we’re calling this one a very modest win for pinto beans.
All in all, adding these up makes for a “if we really are pressed to choose” win for pinto beans, but honestly, enjoy either in accordance with your preference (this writer prefers black beans!), or better yet, both.
Want to learn more?
You might like to read:
What’s Your Plant Diversity Score?
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Almonds vs Pecans – Which is Healthier?
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Our Verdict
When comparing almonds to pecans, we picked the almonds.
Why?
In terms of macros, almonds have more protein, carbs, and fiber, as well as the lower glycemic index. A strong start for almonds here, though pecans have more fat (and the healthy blend of fats is quite comparable from one nut to the other).
In the category of vitamins, almonds have more of vitamins B2, B3, B9, E, and choline, while pecans have more of vitamins A, B1, B5, B6, and K. Numerically that’s a tie, though the biggest margins of difference are for vitamins A and E, respectively, and we might want to prioritize almonds’ extra vitamin E, over pecans’ extra vitamin A, given that vitamin A is more easily found in large quantities in many foods, whereas vitamin E is not quite so abundant generally. So in short, either a tie or a slight win for almonds here.
When it comes to minerals, both contain a lot of goodness, but almonds have more calcium, iron, magnesium, phosphorus, potassium, and selenium, while pecans have more copper, manganese, and zinc. A clear win for almonds, though as we say, pecans are also great for this, just not as great as almonds.
As a side-note, both of these nuts have been found to have anticancer properties against breast cancer cell lines. In all likelihood this means they help against other cancers too, but breast cancer is what the extant research has been for.
So, naturally, enjoy either or both (in fact, both is ideal). But if you want to choose one for nutritional density, it’s almonds.
Want to learn more?
You might like to read:
Why You Should Diversify Your Nuts
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