Category: 8. Health

  • Why a dockside health clinic could be the future of NHS care

    Why a dockside health clinic could be the future of NHS care

    BBC Tom Parker is staring straight into the camera. He is standing on his fishing boat in the harbour, and wearing a black T-shirt and a black plastic life jacket. Behind him is Brixham harbour, with fishing boats in the harbour. BBC

    Tom Parker, 37, broke his leg in a fishing accident three miles off the Devon coast

    Tom Parker was working alone three miles (4.8km) off the Devon coast when his fishing boat hit a wave and lurched to one side.

    “I was pulling one of the ropes and I slipped and fell,” he says. “I had this really, really bad pain in my ankle. So much so, I couldn’t get up off the floor.”

    He didn’t know it at the time, but Tom, 37, had broken his fibula and badly damaged his ankle ligaments.

    He somehow hauled in his fishing gear and made it to hospital to get patched up, but months after the accident his wound just wouldn’t heal properly.

    It was only after he turned up at an innovative clinic on the quayside in Brixham that he was put on strong antibiotics and told he needed a second operation.

    “Without that service, I would have probably ended up with my leg turning septic and I’m not too sure what would have happened after that,” he says.

    Under a 10-year plan, published last month, health officials said the NHS in England needed to undergo a radical shift, away from hospitals to community care, and away from treating sickness to preventing it in the first place.

    There are already small-scale examples of that approach in action across the country.

    So what can we learn from the Brixham model and how can the idea of targeted, local care be extended to treat millions more NHS patients?

    A wide shot showing the entrance to the fishermen's health clinic in Brixham trawler agent's office. There are two receptionists in front of a table in the room which is divided up by temporary blue screens. A doctor is in the middle cubical speaking to a patient. A temporary sign lists the various services on offer including GP access, blood pressure checks and skin cancer checks.

    The fishermen’s health clinic in Brixham is one of 79 Seafit clinics set up in fishing ports across the UK since 2019

    On a clear summer morning a spare room in the trawler agent’s offices in Brixham harbour is quickly being converted into a temporary health clinic.

    Blue screens are dragged across to split up the space: a makeshift reception at the front and then just enough room to cram in two GPs, a pharmacist, a physiotherapist, two nurses and someone organising prostate cancer tests.

    There’s a steady line of port workers coming in, from buyers in the fish market next door to crews from the trawlers in the harbour.

    “The skippers of the boats and the whole fishing community now know exactly where to find us,” says Dr James Gunning, the local NHS GP in charge of the clinic that day.

    “They’re a community that fits into health inequalities, where a population either can’t access, or struggles to access, normal NHS services.”

    Clinic staff start early in the morning, walking around the docks and coaxing workers off the boats with promises of free health screenings and physio.

    “Fishermen don’t have nine-to-five jobs, they don’t have lunchtime where they can just pop off their fishing boat and to the GP’s office, and so it’s really important that we take those services to them,” says Sandra Welch, chief executive of the Seafarers Hospital Society, which runs the initiative along with another charity, the Fishermen’s Mission.

    A pop-up Seafit clinic operates every three months in Brixham and at similar sites at ports across the UK, including Folkestone, Peterhead and Kirkeel in Northern Ireland.

    Some services have started to expand and now offer skin cancer checks, mobile dental services and access to mental health counselling.

    Dr James Gunning, an NHS GP, stands in the temporary fishermen's health clinic in Brixham. He is wearing an NHS T-shirt and has a stethoscope around his neck. Behind him is a receptionist looking at her computer and booking patients into the clinic who turn up for health checks.

    Dr James Gunning, a local GP in Brixham, runs the fishermen’s health clinic at the port along with a team of doctors, nurses and physiotherapists

    In its 10-year plan the NHS accepts that those who live in coastal and rural areas are more likely to experience worse health outcomes and to die younger.

    Seaside and coastal towns often have older populations with more complex health needs, while at the same time local NHS services can suffer from recruitment problems, leaving staffing gaps where they are needed most.

    An analysis of hospital statistics by the BBC suggests NHS trusts in England treating coastal communities tend to have higher than average wait times for both emergency care and appointments booked in advance, like surgery.

    The answer, according to NHS bosses and the Westminster government, is to shift as much treatment as possible out of those expensive hospitals.

    Under the 10-year plan a network of 300 neighbourhood health centres will be opened across England, starting in areas with the lowest healthy life expectancy.

    The sites, which should eventually be open 12 hours a day, six days a week, will be staffed by a mix of GPs, nurses, social care workers, pharmacists, mental health specialists and other medics.

    The big idea, as with the Brixham fishermen’s clinic, is to better tailor health services to local communities, and offer people more checks and tests to stop them falling sick in the first place.

    Much of this might feel very familiar.

    Similar ambitions were set out by ministers in 2019, 2015 and even by the Blair government back in the early 2000s.

    “Despite being the right aim, none of those truly delivered,” says Luisa Pettigrew, a GP and senior policy fellow at the Health Foundation think tank.

    “Moving money out of hospitals and into community services is hard to do. You need the upfront investment and the results might not be visible for five or 10 years, in some cases longer.”

    Healthcare unions have also questioned how the new centres will be staffed, saying doctors “must not be moved around like pieces on a chess board or made to work even harder”.

    Rob Caunter, 66 years old, is seated and staring off camera to the right of frame. He is sitting down on a bench in the port with fishing boats behind him. He has white hair and a white beard and is wearing a grey and white polo T-shirt.

    Rob Caunter, 66, was diagnosed with prostate cancer after being given a blood test at the fishermen’s clinic in Brixham

    The medics working in Brixham though are convinced their local, preventative approach can benefit not just the fishing community but the wider health service.

    “We’ve managed to find new diabetic patients who otherwise may have gone on to develop more serious disease,” says Dr Gunning.

    “We’ve picked out others with cardiovascular disease, and those with high blood pressure. So we would certainly hope we can prevent more costly illness from developing.”

    Rob Caunter, who finally retired from the fish market this year, is just finishing his radium treatment for prostate cancer.

    The 66-year-old, who has a family history of the disease, was diagnosed after staff at the clinic convinced him to take a blood test.

    “I was gobsmacked really because I didn’t think there was anything wrong with me,” he says.

    “If I never went for the checks, I don’t think I would be here today. So it was a real godsend for them to come down to the quay.”


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  • Researchers Identify Promising New Compound to Treat Tuberculosis

    Researchers Identify Promising New Compound to Treat Tuberculosis

    Newswise — Scientists have developed a new compound that could offer a breakthrough in the global fight against tuberculosis, history’s deadliest infectious disease.

    A study recently published in Nature describes the treatment potential of the novel compound known as CMX410. The drug uniquely targets a crucial enzyme in Mycobacterium tuberculosis, the bacterium responsible for tuberculosis. Importantly, this compound even proved effective against drug-resistant infections, which are common globally and pose a significant challenge for controlling the disease’s spread and progression.

    The study was led by James Sacchettini, Ph.D., the Rodger J. Wolfe-Welch Foundation Chair in Science, Texas A&M AgriLife Research scientist and professor in the Texas A&M College of Agriculture and Life Sciences Department of Biochemistry and Biophysics and College of Arts and Sciences Department of Chemistry. He was joined by Case McNamara, Ph.D., senior director of infectious disease at Calibr-Skaggs Institute for Innovative Medicines, the nonprofit drug development division of Scripps Research dedicated to accelerating next-generation medicines.

    The discovery was made possible through collaborations formed by the TB Drug Accelerator program, an initiative funded by The Gates Foundation to support research focused on developing the most promising tuberculosis treatments.

    “A lot of people think of tuberculosis as a disease of the past,” Sacchettini said. “But in reality, it remains a major public health issue requiring significant attention, collaboration and innovation to overcome.”

    As part of the ongoing fight against tuberculosis, scientists within Texas A&M AgriLife Research and Calibr-Skaggs have developed a promising new compound targeting a key bacterial enzyme on M. tuberculosis. The compound, using a novel mechanism, proved effective against even drug-resistant strains of tuberculosis in early studies. (Inna Krieger/Texas A&M AgriLife)

    A smarter way to fight back

    The new compound identified by AgriLife Research and Calibr-Skaggs works by blocking a crucial enzyme, polyketide synthase 13 or Pks13, that M. tuberculosis needs to build its protective cell wall. Without the functionality of this protein, the bacteria can’t survive to cause infection.

    For over a decade, scientists have recognized this protein as a high-value target in the fight against tuberculosis. Yet, despite its potential, drug development efforts have repeatedly fallen short — largely because compounds must clear a high bar for both safety and therapeutic performance.

    The unique mechanism of CMX410 makes it highly specific for its target, which translates to a favorable safety profile. By incorporating a reactive chemical group that forms an irreversible bond with a critical site on Pks13, the researchers enhanced the compound’s selectivity, minimizing potentially negative off-target effects. This modification also reduces the likelihood of resistance emerging.

    The addition of this key chemical group was accomplished with click chemistry, a method that snaps molecules together like puzzle pieces. Click chemistry was developed by co-author Barry Sharpless, Ph.D., W.M. Keck Professor of Chemistry at Scripps Research and two-time Nobel Laureate, and it has led to the development of extensive libraries of chemical compounds.

    “This technique represents a new tool for drug design,” said McNamara. “We expect to see its uses expand in the coming years to help address public health concerns with a critical need, including tuberculosis.”

    Early results prove safe and effective

    The team began by investigating a library of compounds shared by the Sharpless lab to identify molecules that could inhibit bacterial growth of M. tuberculosis.

    After intensive optimization to improve compound potency and other pharmacological properties led by Calibr-Skaggs tuberculosis team members and co-first authors Baiyuan Yang, Ph.D., associate director of medicinal chemistry, and Paridhi Sukheja, Ph.D., investigator of infectious diseases, CMX410 was identified as a strong contender.

    Yang, who led the chemistry optimization, said the team explored more than 300 analogs to identify a compound with the right balance of potency, selectivity and safety. The team ultimately tested CMX410 against 66 strains of M. tuberculosis and found that it worked on both laboratory and multidrug-resistant strains collected from real patients.

    “Identifying this novel target was an exciting moment,” said Sukheja, who led many early studies showing CMX410 could target a previously unexplored gene. “It opened up a completely new path forward, especially against strains that have learned to evade existing treatments.”

    In other early experiments, the researchers determined that CMX410 could be safely combined with other tuberculosis antibiotics. This was an especially important factor for this disease, as treatment regimens require multiple drugs to be taken together for months at a time.

    Researchers found no adverse effects in their initial tests in animal models even at the maximum dose level. And because CMX410 is highly specific to its target protein, they see it as unlikely to disrupt other beneficial bacteria or cause broader microbiome imbalances, a common side effect of conventional antibiotics.

    Progress toward better treatments

    The addition of a specialized chemical group that allows CMX410 to irreversibly bind to its target makes the compound extremely selective. These types of inhibitors remain an exciting and underexplored class of drugs, and further research will be needed to confirm their safety for humans.

    Nonetheless, the precision, unique mechanism, good safety profile and other key features all make CMX410 a promising candidate for treating tuberculosis.

    “These early results are very encouraging,” said Inna Krieger, Ph.D., senior research scientist in Sacchettini’s lab and co-first author of the study. “Cell wall-targeting antibiotics have long been a cornerstone of tuberculosis treatment. However, after decades of widespread use, their effectiveness is waning due to the rise of drug-resistant strains.

    “We are working to discover new drugs that disrupt essential biological processes and identify optimal combinations with existing drugs to enable shorter, safer and more effective treatment regimens. Through these efforts, we hope to help move the world closer to a future free from tuberculosis.”

    Discover how scientists in the Department of Biochemistry and Biophysics are solving complex biological problems through groundbreaking research.

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  • Are Potatoes Healthy? Not in the Form of French Fries, Diabetes Study Shows

    Are Potatoes Healthy? Not in the Form of French Fries, Diabetes Study Shows

    Should you eat white potatoes if you’re worried about diabetes? The starchy tuber’s high carbohydrate content and elevated glycemic index (a measurement of how quickly a food raises blood sugar) has given it a bad reputation among people conscious of their glucose levels.

    But a new study finds that the issue might not lie with the potato itself, but with how you cook it and what you eat instead.

    “We found that eating french fries was linked to a higher risk of type 2 diabetes, but other types of potatoes — like baked, boiled, or mashed — didn’t show the same risk,” says the lead author, Seyed Mohammad Mousavi, PhD, a postdoctoral research fellow at Harvard University in Cambridge, Massachusetts.

    He and his team decided to embark on this investigation because previous evidence on the link between potatoes and type 2 diabetes risk has been mixed, and the studies have often ignored how the potatoes were cooked.

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  • Pancreatic Involvement by Mixed Serous Neuroendocrine Neoplasm Detected by Endosonography With Fine-Needle Tissue Acquisition in Von Hippel-Lindau Disease

    Pancreatic Involvement by Mixed Serous Neuroendocrine Neoplasm Detected by Endosonography With Fine-Needle Tissue Acquisition in Von Hippel-Lindau Disease


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  • New Wearable Tech Is Coming To Help Manage Perimenopause

    New Wearable Tech Is Coming To Help Manage Perimenopause

    Ah, perimenopause—or, as we like to call it, Puberty 2.0. The slew of symptoms during this hormonal fluctuation are so all-encompassing that it’s hard to know whether you’re in perimenopause or whether you might be experiencing other, more dangerous health issues. And, of course, there’s the little voice that wonders if it’s all just in your head…

    Enter: Peri by IdentifyHer, a wearable sensor designed to offer insights on symptoms linked to perimenopause, launching this fall. Specific details are still TBA, but the company claims Peri can accurately track not only the more noticeable symptoms like hot flashes and night sweats, but also the more subtle changes in the body (trouble sleeping, increased anxiety) that often get brushed off as regular life stress. The device, reminiscent of a continuous glucose monitor (but without the painful skin prick), adheres to the skin on your ribcage below your breast.

    Generally, it’s good to approach wearable tech with a healthy degree of skepticism. It can be hard to strike that balance between monitoring and over-monitoring yourself (see orthosomnia). But in this particular case, a bit of over-monitoring might be helpful—both for the individual and for the greater good.

    Tools like Peri could help combat the widespread lack of information and support for menopausal symptoms. Doctors are often either unwilling or unequipped to take perimenopause symptoms seriously, and as such, many women struggle to get treatment. Research from IdentifyHer’s recent Peri Report claims that 44 percent of women in perimenopause had to wait over a year to receive treatment—and 12 percent waited more than five. And women of color face not only worse healthcare barriers, but also (as if the systemic racism wasn’t bad enough!) tend to go through perimenopause earlier, longer, and with more severe symptoms.

    FemTech tools in general have actually been shown to help push back against that inherent bias that women face in healthcare. Additionally, a sensor like this could offer tangible, personalized insights to help you keep track of what’s going on with your body and empower you to be an advocate for your own health.

    You can now join the waiting list for Peri by IdentifyHer, coming later this fall.

    Headshot of Sofia Lodato

    Sofia Lodato (she/her) is the editorial assistant at Oprah Daily. Aside from reading, writing, and wellness, she is a lover of all things media-related, and can usually be found overanalyzing her latest favorite show, album, or video game.
     

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  • The National Institute of Neurological Disorders and Stroke Celebrates 75 Years of Research

    The National Institute of Neurological Disorders and Stroke Celebrates 75 Years of Research


    Courtesy NINDS

    When Celia Fairbanks fell down several times after getting out of bed one morning in late April 2025, she thought she was having a bad reaction to an antibiotic she’d been given for an infected insect bite the day before. “I called the nurse from my primary care office, and while I was on the phone with her, I started slurring my words, and the words I wanted to say in my head weren’t coming out of my mouth right,” says Fairbanks, a 28-year-old history student from Gaithersburg, MD. “So the nurse told me to hang up the phone and go to the ER right away.”

    At Suburban Hospital in Bethesda, MD, she underwent several MRI scans. Doctors soon told Fairbanks she was having a stroke, with a clot blocking a blood vessel in her brain. They quickly administered tenecteplase (TNK), a clot-busting drug that restores blood flow and significantly improves outcomes in acute ischemic stroke.

    “Within five minutes, I started feeling better,” says Fairbanks, who has a genetic predisposition for clotting and developed a blood clot as a teenager. “From not being able to say words and being totally out of it, I was completely back to normal. They kept me under observation in the ICU for 24 hours and repeated the MRIs, which showed that the clot was still there, but it was much smaller, and it was moving and not blocking blood flow anymore.”

    Fairbanks walked out of the hospital fully recovered just one day after the stroke, thanks in large part to four decades of research led by the National Institute of Neurological Disorders and Stroke (NINDS). The institute, part of the National Institutes of Health (NIH), celebrates its 75th anniversary this year. NINDS conducts and supports a wide range of research in neuroscience and neurology, driving discoveries that have advanced our understanding of how the brain works and led to powerful treatments.

    “The past 75 years of NINDS have been completely transformative for neurologic research,” says S. Andrew “Andy” Josephson, MD, FAAN, professor and chair of neurology at the University of California, San Francisco. “Research that NINDS has supported extends from the most basic science and fundamental understanding of the nervous system to clinical trials of drugs and other therapeutics, which have provided cures and effective treatment for so many neurologic disorders. Without NINDS, these important therapies never would have come to fruition.”

    One of those therapies is TNK, the drug that almost instantly broke down Fairbanks’ clot and resolved her stroke symptoms. In December 1995, a NINDS-sponsored trial of a thrombolytic—a medication that dissolves blood clots—called tissue plasminogen activator (tPA) led to the approval of the first treatment for acute stroke. TNK, which has similar outcomes with a more convenient administration protocol, has since replaced tPA as the preferred emergency stroke medication.

    “Previously, stroke was a disease with no treatment at all, and many organizations did not want to invest in finding treatments because of the belief that it was too hard to crack,” Dr. Josephson says. “NINDS stepped forward and funded pivotal trials, including that of thrombolytics, that have helped save millions of lives and prevented the kind of disability that we all hope we will never have.”

    And NINDS played another role in Fairbanks’ recovery. As a younger patient with relatively mild symptoms—her score on the NIH Stroke Scale was only a 1 out of 42—suspicion that she was having a stroke was relatively low. “They could so easily have just said, ‘You’re young. You probably have a cold or the flu, and you’re just out of it. Go home and take it easy,’” Fairbanks says.

    But since 1999, Suburban Hospital has collaborated with NINDS to evaluate using MRI to assess patients with signs of stroke and identify who can benefit from clot-busting drugs even if their symptoms seem mild—as well as patients like Fairbanks who don’t know the time their strokes began. The sooner treatment starts, the more effective it is.

    John Lynch, DO, MPH, the stroke neurologist who treated Fairbanks, leads that collaboration. “Our work has identified specific markers on MRI that were associated with a poor outcome in patients with what appears to be a minor stroke,” he says. “On [Fairbanks’] MRI scans, she had a couple of those markers, clearly showing she was at very high risk of worsening in the hospital and potentially being permanently disabled. So this research has allowed us to select the right people for treatment while at the same time not treating people who would be at high risk for complications.”

    The Evolution of NINDS

    A driving force behind NINDS’ creation in 1950 was Mary Lasker, a health activist and philanthropist who lost both parents to stroke. Lasker lobbied other donors, legislators, and presidents to increase funding for medical research. She pushed Congress to create the institute, initially called the National Institute of Neurological Diseases and Blindness, says NINDS director Walter Koroshetz, MD. The institute’s initial budget—$1.24 million—was the first dedicated federal funding for neurologic research in the United States.

    Lasker’s influence—she had pressed President John F. Kennedy to create a national commission on cancer, heart disease, and stroke in the early 1960s—also helped lead to NINDS’ expansion and renaming in 1968. (The blindness program split off into the new National Eye Institute.)

    One of NINDS researchers’ first major discoveries came in the early 1960s with the identification of the enzyme deficiencies responsible for several inherited metabolic disorders, including Gaucher and Fabry diseases. Roscoe Brady, MD, who joined NINDS in 1954 and spent his entire career there, did the pioneering work and ultimately headed the developmental and metabolic neurology branch. Over three decades, Dr. Brady and his group essentially created the field of enzyme replacement therapy, which transformed fatal inherited diseases into treatable chronic conditions.

    Today, with a budget of just over $2.03 billion, NINDS has two major divisions: intramural research, one of the largest neuroscience research centers in the world, which conducts important research in basic, clinical, and translational neuroscience, and extramural research, which funds programs outside the NIH, including major clinical trials, and supports training for future neurology and neuroscience leaders.

    A major component of the agency is StrokeNet, a group of regional stroke centers established in 2013 to promote and conduct high-quality clinical trials focused on advancing acute stroke treatment, prevention, recovery, and rehabilitation. Another is the Network for Excellence in Neuroscience Clinical Trials (NeuroNEXT), established in 2011 to develop and conduct clinical trials of promising new therapies for neurologic disorders other than stroke in partnership with academia, private foundations, and industry. At least 10 NeuroNEXT studies are at various stages of completion, testing biomarkers or therapies for several conditions.

    Countless great advances in the treatment of once “untreatable” disorders have come about through the support of NINDS. One remarkable example is spinal muscular atrophy (SMA), a group of hereditary diseases causing progressive muscle weakness and degeneration. SMA primarily affects infants and children and occurs in 1 in 10,000 births, making it the second most common severe hereditary disease of that age group (after cystic fibrosis). The most severe and more common form, SMA type 1, until recently, was almost universally fatal by age 2. Work NINDS supported, however, helped identify the gene that causes SMA, known as SMN1, and a nearly identical back-up gene, SMN2, that partially compensates for SMN1 deficiencies.

    Between 2003 and 2012, NINDS piloted the Spinal Muscular Atrophy Project to accelerate research and development of new therapies. This ultimately led to the approval of several groundbreaking treatment options: a gene replacement therapy called Zolgensma and two drugs, nusinersen (Spinraza) and risdiplam (Evrysdi). The U.S. Food and Drug Administration’s 2016 approval of nusinersen marked the first time an antisense oligonucleotide therapy, which alters genetic instructions to produce a healthy version of a missing or damaged protein, was successfully used to treat a neurologic disorder.

    Dr. Koroshetz anticipates many more advances in treatments for neurogenetic diseases with the support of NINDS research in the near future. Foundational neuroscience studies have helped lead to today’s gene-editing programs, he says. “I was recently at a meeting with people who are working on programs to gene-edit Huntington’s disease, ataxia, prion disease, and Duchenne muscular dystrophy,” Dr. Koroshetz adds. “These therapies are among the most powerful and precise tools that we will have to treat neurological diseases.”

    In May 2025, researchers shared that the gene-editing tool CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) was used to treat an infant with a urea cycle disorder, in which toxic, brain-damaging levels of ammonia build up in the body. It was the first time CRISPR was successfully used to fix a single patient’s unique genetic error.

    “It sounds like science fiction, but these things are going to happen, and how fast they happen depend on how much we invest in moving this research forward,” Dr. Koroshetz says. “Thanks to networks like NeuroNext and StrokeNet, as well as our therapy development team, we have been quite effective at getting the process of therapeutic development to fruition.”

    NINDS also played an instrumental role in training the next physician-scientists, Dr. Josephson adds. “Generation after generation, these are the people who have made these discoveries and cures reality,” he says. “It’s impossible to overstate how important and successful NINDS has been for people with neurologic conditions and their families. … If we are to continue the remarkable pace of breakthroughs in neurology that we’ve enjoyed in the last two to three decades, continued support for NINDS is essential.”

    Fairbanks agrees. “I feel like I walked away from a crazy car accident without a scratch on me,” she says. “All these experts and all this research came together to help me. I’m just so grateful.”


    NINDS Through the Years

    • 1950: President Harry S. Truman signs Public Law 81-692, establishing the National Institute of Neurological Diseases and Blindness.
    • 1968: The institute is expanded and renamed the National Institute of Neurological Diseases and Stroke (NINDS).
    • 1976: D. Carleton Gajdusek, MD, chief of NINDS’ Laboratory of Central Nervous System Studies, receives a Nobel Prize for work on atypical slow virus infections.
    • 1989: President George H.W. Bush signs a resolution declaring the 1990s the “Decade of the Brain.”
    • 1991: A team led by Roscoe Brady, MD, develops alglucerase injection (Ceredase), the first approved enzyme replacement therapy for Gaucher disease.
    • 1996: Based on NINDS research, tissue plasminogen activator (tPA) becomes the first approved treatment for acute ischemic stroke.
    • 1997: Deep brain stimulation (DBS) is approved to treat Parkinson’s disease, thanks to critical studies from NINDS neuroscientists. NINDS-funded scientists also advance brain stimulation to control seizures in people with epilepsy.
    • 2013: The NeuroBioBank gives researchers access to human brain tissue for studying and driving advances in brain disorder treatments.
    • 2014: The John Edward Porter National Neuroscience Research Center, housing intramural researchers from NINDS and other institutes, opens in Bethesda, MD.
    • 2014: The Brain Research Through Advancing Innovative Neurotechnologies (BRAIN) Initiative kicks off, aiming to develop and apply new technologies to answer key questions about the brain.
    • 2015: Based on NINDS-funded research, the American Heart Association/American Stroke Association update their stroke treatment recommendations to include using stent retriever devices for clot removal in certain emergent or acute stroke cases.
    • 2016: The Accelerating Medicines Partnership (AMP) Parkinson’s disease project launches with substantial support from NINDS.
    • 2016: NINDS launches the Mind Your Risks campaign to raise awareness about the connections among high blood pressure, stroke, and dementia.
    • 2016: The 21st Century Cures Act establishes the Beau Biden Cancer Moonshot and NIH Innovation Projects, providing $1.5 billion for the BRAIN Initiative.
    • 2017: The first treatment for Batten disease, a group of rare genetic disorders affecting young children, is approved thanks in part to NINDS research identifying its cause.
    • 2018: Results from a NINDS-funded clinical trial expand the window of treatment for emergent or acute stroke.
    • 2024: Building on decades of NINDS-funded research, several DBS therapies are announced, including brain-computer interfaces enabling people with paralysis to communicate.


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  • ADHD Myths Debunked in New Guide for Patients and Families

    ADHD Myths Debunked in New Guide for Patients and Families


    Misinformation about attention deficit/hyperactivity disorder (ADHD) has been rampant since the American Psychiatric Association formally recognized the condition in the late 1960s. Among the myths: ADHD was unique to young boys, possibly exacerbated by bad parenting or laziness. Children could outgrow it. It wasn’t “real,” and those diagnosed with the condition and their caretakers were just trying to secure prescription drugs.

    Experts attest that none of that is true.

    Sarah Cheyette, MD, a pediatric neurologist in private practice who treats children and adults, and Benjamin Cheyette, MD, PhD, a psychiatrist and director of the ADHD program at Mindful Health Solutions, set the record straight in their new book, Navigating Life with ADHD, part of the Brain & Life book series. Published in August and aimed at patients, caregivers, and clinicians, their guide touches on the neurobiological and environmental factors that contribute to ADHD; ways the disorder manifests in patients; and treatments, including pharmacological aids and behavioral changes. The writing is conversational, not scientific, and often includes patient vignettes.

    This is the couple’s second book collaboration, following 2016’s ADHD & The Focused Mind (Square One Press), written with Peter Johnson. Their new book’s release comes as the number of children and adults diagnosed with ADHD is “exploding,” Sarah says. “I don’t think there’s another word for it.”

    In 2024, researchers with the Centers for Disease Control and Prevention called juvenile ADHD “an ongoing and expanding health concern,” with an estimated 7.1 million children ages 3 to 17 diagnosed with ADHD. That’s an increase of 1 million cases since 2016.

    The number of adults with diagnosed ADHD also keeps growing, from 4.5 percent to 6 percent—a total of approximately 15.5 million American adults as of 2023.


    Learn more: What Neurologists Are Learning from Treating Adults with ADHD


    A 2024 survey commissioned by The Ohio State University Wexner Medical Center and College of Medicine found that 1 in 4 respondents thought they might have ADHD. Many experts believe the rising number of cases can be attributed in part to better diagnostic practices, less stigma, and a deeper understanding of the disorder’s potential biological and environmental causes.

    The California-based Cheyettes have studied ADHD for more than 20 years. Sarah’s medical practice originally focused on children with headaches. For many, she found that ADHD was at the root of their head pain.

    “ADHD was causing so much stress and disruption in their lives that treating their ADHD actually helped their headaches,” she says. “ADHD is a big component of anxiety, depression, and other psychiatric issues that traditionally were considered separate from ADHD.”

    ADHD manifests in different ways. Some patients are deemed hyperactive, and others inattentive. This can vary with a patient’s age, too. “You might be the little boy who can’t sit still who is constantly interrupting the teacher and causing mayhem in the classroom who, as an adult, doesn’t have a problem with hyperactivity,” Benjamin says. “Maybe you tap your foot at meetings or fidget and get up once in a while, but it doesn’t interfere with your life. But now you as an adult can’t pay attention to what your wife is saying, or you can’t get your taxes done on time.”

    It’s unknown exactly what causes ADHD, but the Cheyettes believe a combination of genetic and environmental factors are at play. “It’s clearly neurological,” Sarah says.

    One model suggests ADHD is a conflict between the brain’s default mode network (most active during daydreaming or meditating) and its central executive network (involved in paying attention). “Think about those two networks competing for brain space,” Benjamin says. “Somebody with ADHD may have a problem switching between networks … and that creates a problem with focus.”

    Another theory suggests that defects along the brain’s dopamine reward pathway cause ADHD. Core medications for ADHD, including Ritalin (methylphenidate) and Adderall (a combination of amphetamine and dextroamphetamine), work by increasing levels of dopamine, a neurotransmitter the body releases when an individual feels pleasure and motivation.

    “People with ADHD have trouble focusing on long-term rewards at the expense of short-term rewards,” Benjamin says. “They’re constantly chasing the latest thing that crosses their attention, as opposed to staying focused on a long-term goal.”

    Environmental factors contributing to ADHD include modern digital media habits. A study of teen media habits published in JAMA in 2018 found that 15 and 16 year olds who most frequently engaged in social media also were most likely to show symptoms of ADHD. A Pew Research Survey that same year found that 15 percent of adults lost focus at work and 8 percent of teens struggled to pay attention in school because of their cell phone use. Benjamin has seen patients who spend all day watching brief videos and then say they have trouble focusing.

    “Social media and other forms of passive, short digital entertainment degrade people’s ability to pay attention when used too much over time,” he says, adding, “If you don’t do anything or make any effort to build up your attention span … and instead spend all your time watching short influencer videos, it’s no wonder you don’t develop an attention span that you can use when you actually need it.”

    Someone with ADHD can’t be blamed for their diagnosis, but that doesn’t stop many from calling themselves lazy or unintelligent. To combat that, Sarah suggests children get three good pieces of feedback for every negative or corrective feedback.

    “It’s important that those kids and adults learn that there is biology behind their behavior,” she says. “It makes them feel like, ‘Wait a second. I’m not a bad person or a bad human. I’m a product of my biology,’ and biology can be modified or improved.”


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    For more information about the Brain & Life book series, including the new ADHD book and the recently released Navigating Life with Multiple Sclerosis, second edition, visit Brain & Life books. Books are available for purchase through Amazon.


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  • Smartphone Apps Can Help Manage Parkinson’s, Migraines, Epilepsy, and More

    Smartphone Apps Can Help Manage Parkinson’s, Migraines, Epilepsy, and More


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    Stacee Hawkins credits a health-changing aha moment to a smartphone app. Linked to her smartwatch, StrivePD, from Rune Labs, automatically detects and records tremors and muscle spasms called dyskinesia in addition to tracking her diet, physical activity, sleep, medications, stress, and more.

    “I see connections more quickly now,” says Hawkins, 56, a video producer from Houston, TX, who was diagnosed with Parkinson’s disease four years ago. “I discovered that exercising helps my Parkinson’s medication kick in faster in the morning. Being active also reduces the severity of my tremors by about two-thirds—my muscles don’t tighten up and shake as much. So I make sure I exercise, even if it’s just a short walk in the morning.”

    Hawkins isn’t alone. For people with a wide range of neurologic conditions—including migraines, chronic pain, epilepsy, stroke, multiple sclerosis, cerebral palsy, and dementia—smartphone apps and features can make it easier to take care of your health (or that of a loved one) and get the most from medications, lifestyle choices, and health care visits, according to Benjamin Kummer, MD.

    “There are tons of apps out there for neurological conditions,” says Dr. Kummer, director of clinical informatics in neurology and an associate professor of neurology at the Icahn School of Medicine at Mount Sinai in New York City. “If people are tech-savvy enough to use them and motivated to use them regularly, they can be very helpful.”

    Lisa Wetchler, 39, who has had debilitating migraines since age 18, says using a migraine app called Headway: Migraine Monitor helps her see potential patterns for when her migraines occur and keep up with logging her symptoms. “Reviewing periods of increased headaches, I can sometimes identify a trigger, such as time of day, that I wouldn’t otherwise be aware of,” says Wetchler, who lives on Long Island, NY. The app simplifies tracking, which is especially helpful during severe headaches that can make her nauseated and interfere with her vision, speech, and even thinking. “Sometimes when a headache has been present for many hours, it can be hard to recall when it actually started, especially because it is so hard to think clearly,” she says.

    One benefit: “I find myself being more aware of the migraine symptoms as part of the logging process, and that encourages me to take my abortive therapies earlier,” Wetchler says. “As many migraineurs know, the earlier you take your abortive therapy, the more likely it is to work.”

    What Your Phone Can Do for You

    Apps and built-in phone features can help you manage a neurologic condition in several important ways, neurologists and app users say. They include:

    Preparing for and recording a doctor visit.
    Jen Zupon, 50, a human resources information systems administrator from Gilbert, AZ, uses her phone’s note-taking app to jot down questions before appointments with the neurologist and movement disorders specialist she sees for her Parkinson’s disease. Then, Zupon brings a friend to take notes in the app during the appointment. Patients also can use audio recording apps to record their appointments but should ask for their doctor’s consent first; some states require permission to record, and some doctors might not be willing.

    Tracking physical activity and more.
    Don’t overlook the health app that comes preloaded with certain phones. It may be all you need. “I encourage people to use the basic, built-in activity monitor in most smartphones,” Dr. Kummer says. “Regular exercise ensures brain health in almost all neurological conditions, including cognitive decline and dementia.”

    These general apps can do even more than track physical activity. Zupon links hers to a Bluetooth-enabled blood pressure monitor to log her numbers. “My blood pressure has been high for a long time, but Parkinson’s tends to lower blood pressure,” she says. “Tracking helps my doctor adjust my blood-pressure medications.”

    Keeping records handy.
    Zupon also stores her health records and a list of all her medications and supplements in her general health app. “That makes it easy when I’m filling out paperwork at a doctor’s office or want them to see what I’m taking,” she says. “It’s all in one place in my phone.”

    Logging symptoms with condition-specific apps.
    Available for people with epilepsy, migraine, multiple sclerosis (MS), Parkinson’s, pain, and other conditions, plenty of consumer neuro-health apps let users log flare-ups, fatigue, anxiety, mood shifts, cognitive changes, and other symptoms as well as treatments, diet, exercise, sleep, and other triggers that could influence their condition. Many offer clickable lists that make tracking easy, have medication reminder alerts, can display trends over time so you can spot connections between medications and your lifestyle—and can produce data or concise summaries for when your neurologist asks about your recent symptoms. Some apps can send the data or summaries directly to your doctor, care team, or electronic health records if offices are set up for that.

    Apps linked to wearables and interactive features.
    Some emerging apps for neurologic conditions use a smartwatch or interactive tests to sense even mild symptoms, such as Parkinson’s tremors and excess medication-induced movement spasms (dyskinesia), epileptic seizures, and hand function and balance in people with MS. The info can help you spot problems sooner, Hawkins says, although the sensors aren’t infallible. Hawkins sees false-positive records for dyskinesia when she’s moving to the music at a concert or driving a golf cart, for example. Some sensors have suboptimal sensitivity and specificity characteristics, which can be misleading for patients with epilepsy who are trying to track their seizures.

    Diagnosed with Parkinson’s two years ago, Zupon uses the same smartphone app/smartwatch system as Hawkins—StrivePD—to spot connections between triggers that exacerbate her key symptom: slowed-down movements called bradykinesia. “Stress is a factor for me,” says Zupon. “On days when I know I’ll experience more stress, I’ll plan to take more medication to control my symptoms.” (In some conditions, a neurologist may offer a patient latitude in adjusting medications based on symptoms, but this should be discussed with the prescriber, as extra doses of some drugs, such as many seizure medications, could cause toxicity.)

    For Hawkins, smartwatch data also alerted her to times her medications wore off early, helping her doctor decide that a timed-release dose would be more beneficial. “The app helps me see what’s happening for me personally, and I can take the data to my doctor for help with managing it,” Hawkins says.

    Education, at-home care, and rehabilitation.
    Some apps can guide you through home-care programs, such as meditation for chronic pain and home rehabilitation after a stroke. “Cognitive training and speech therapy apps for stroke survivors can be very helpful for some people,” Dr. Kummer says. “But it’s not one-size-fits-all. Certain apps can serve as, for example, occupational or speech therapy treatments but may not address the specific needs of other patients. It’s a good idea to talk with your doctor or rehabilitation specialists to see what they recommend for you.”

    Meanwhile, apps aimed at people with neurologic conditions can provide curated news and information about a condition, such as those designed for stroke, cerebral palsy, and MS. Zupon read about a new drug pump on a news app and noted it in her phone to discuss at an upcoming medical visit. (Patients should note, however, that direct-to-consumer advertising may support certain apps, which could lean more toward promotional than educational.)

    Help for caregivers.
    Apps also can help the family and caregivers of people with dementia understand and manage their loved one’s challenging moods and behaviors. And apps for parents and caregivers of children with cerebral palsy can help them detect early signs of hip displacement, a common effect of the condition. Still others offer support for caregivers of stroke survivors.

    Staying aware.
    Certain apps can provide valuable and current information about neurologic issues. FAST.AI, for instance, can recognize common stroke symptoms while they happen.

    User Beware

    But with thousands of apps and plenty of smartphone features to choose from, figuring out what will work for you can be challenging. In a review of studies of 20 consumer apps for epilepsy, published in Epilepsia in February 2025, Dr. Kummer and a team concluded that while the apps can be effective and user-friendly, more rigorous research is needed so patients and their doctors can make informed decisions.

    When Mia T. Minen, MPH, MD, FAAN, a headache medicine specialist at NYU Langone Health in New York City, and a team assessed 201 apps for headache, insomnia, and pain for a study published in the journal JMIR mHealth and uHealth in June 2022, they found “room for improvement” in data privacy protections and accessibility. This included whether apps could work on different operating systems and be used without an internet connection.

    “Apps can definitely help patients notice patterns, which can help them to ease their symptoms. And they can share this information with their neurologist,” Dr. Minen says. “But it’s important to realize that many on the market have not been fully studied.”

    Still, many apps for neurologic conditions have real benefits because they can help consumers personalize their self-care and medical care, says Vincent S. DeOrchis, MD, MS, FAAN, a neurologist at Neurological Associates of Long Island and director of neurology at St. Francis Hospital in Roslyn, NY, who developed the app Headway: Migraine Monitor. Tracking in general is a great idea, he adds.

    “I actively encourage my patients to use headache-tracking apps and share the generated insights during consultations,” he says. “By reviewing their logged data and associated analytics, patients become more engaged in their care, making consultations more productive. The information from the app frequently highlights patterns, triggers, or responses to medication that might otherwise be overlooked, leading to more precise and personalized treatment adjustments.”


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    Five Tips for Choosing the Best Health App for Your Neurologic Condition


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  • What to Know About Symptoms, Diagnosis, and Life After Surgery

    What to Know About Symptoms, Diagnosis, and Life After Surgery


    Illustration by Maria Hergueta

    When Rick Labuda was 31 and expecting his first child, his wife pushed him to finally seek medical care for long-ignored symptoms that included intense, exertion-induced headaches; constant neck pain; and an atrophying right shoulder. After an X-ray of his neck revealed a congenital fusion of his skull and top vertebra, a subsequent MRI led to a diagnosis of type I Chiari malformation. In this condition, the bottom part of the cerebellum, known as the cerebellar tonsils, protrudes through the foramen magnum, the hole at the base of the skull where the spinal cord enters.

    Things happened fast following Labuda’s diagnosis. He met with a neurosurgeon, who conducted a number of tests, such as seeing if he could balance with his eyes closed, feet together, and head tilted back. “It was quite a shock to see that I couldn’t pass basic neurological tests and that I would need to have surgery to resolve my problems,” he recalls.

    Labuda had surgery about four months after his diagnosis, shortly following the birth of his daughter. He went back to his job in tech within weeks, though over the next few years, he found that shoulder and neck pain made it increasingly difficult to continue working in a traditional office. “My life was difficult afterwards, because I still had Chiari-related nerve damage even though the surgery stopped the progression of symptoms,” he says.

    Within a few years of surgery, Labuda left his career so he could focus more on his recovery. He’d begun devoting more and more time to researching Chiari, and in 2004, he started a nonprofit called Conquer Chiari. Now 57 and with three grown children, Labuda lives with his wife near Pittsburgh and is the organization’s executive director. “My pain is no longer constant, and I’m doing very well, but it was a long road,” he says. “I believe it’s important for patients to try and find purpose and set up a life situation that enables them to focus on the things most important to them.”

    Headaches and More

    Chiari is a complex condition that has two broad consequences, according to Robert Friedlander, MD, chair of the department of neurological surgery at the University of Pittsburgh School of Medicine: the cerebrospinal fluid (CSF) cannot flow as it should, and pressure is put on the spinal cord. CSF blockage causes intermittent, increased pressure on the brain and leads to headaches in the back of the head, which affect the occipital nerves running through the scalp. Labuda experienced these headaches, which Dr. Friedlander called the cardinal symptom of Chiari. Coughing, sneezing, or straining can worsen headaches near the base of the skull, he adds.

    The second most common Chiari symptom is numbness and tingling in the extremities, the result of pressure on the spinal cord. Other potential symptoms include balance issues, neck pain, and muscle atrophy, like Labuda experienced. Some patients may experience tinnitus or ringing in the ears, swallowing and breathing difficulties, mild cognitive problems, and vision issues.

    No concrete explanation exists for why Chiari-related symptoms can vary so much. Dr. Friedlander says some patients whose Chiari looks severe on MRI don’t have symptoms, while others whose Chiari looks mild may have severe symptoms. After performing more than 500 surgeries, he says he and others “are beginning to find that some people have membranes, known as embryological remnants, that aren’t visible on MRI and which could obstruct the flow of CSF to varying degrees.”

    There are two categories of Chiari: congenital and acquired. In the congenital form, Dr. Friedlander says patients are born with an abnormally small posterior fossa—the cavity at the base of the head—and the cerebellum essentially gets pushed out because it does not have enough room. “Some people are born with it but do not have symptoms until later in childhood or even adulthood,” he adds.

    He suspects a correlation likely exists between a small trauma and onset of the condition. “It’s not fully understood, but when patients are born with the congenital form and don’t develop symptoms until 30 years old, you ask yourself why,” Dr. Friedlander says. “There is likely something like a fall or some other event that triggers the cerebellum to sag a bit more.”

    Acquired Chiari, meanwhile, occurs for two possible reasons: pressure from above the foramen magnum, like a tumor or hydrocephalus, or pulling from below the foramen magnum, such as a CSF leak or a tear in the dura, the outermost layer of the membranes that surround and protect the brain and spinal cord, he says.

    In addition to these broad categories of Chiari, the condition has four classifications. According to the National Institute of Neurological Disease and Stroke, the vast majority of patients have type I, the mildest form. Type II, sometimes referred to as Arnold-Chiari malformation, usually includes a form of spina bifida (a birth defect in which the spinal cord and spinal bones do not close completely while developing) and both the cerebellum and brainstem extending into the foramen magnum. Types III and IV are the rarest and most severe; in type III, both the cerebellum and brainstem protrude through a hole in the skull, and type IV involves an incomplete or underdeveloped cerebellum.

    While surgical techniques have evolved some since Labuda was treated more than 20 years ago, surgery remains the only treatment for symptomatic Chiari malformation. The condition “is a mechanical problem because part of the skull doesn’t have enough room, so it needs a mechanical solution, which is to give that area more space,” Dr. Friedlander says.

    Before surgery occurs, however, neurosurgeons say it is critical to rule out other explanations for symptoms that may be linked to other issues. Edward Ahn, MD, a pediatric neurosurgeon and chief of pediatric neurosurgery services at the Mayo Clinic in Rochester, MN, says while between 1 and 3 percent of all brain MRIs will technically show a Chiari malformation, it may not be the cause of a patient’s brain-related symptoms. “The challenge as a clinician is delving deep into a patient’s symptoms in order to discern whether the problem is due to the malformation,” he says.

    If surgery is deemed appropriate, Dr. Friedlander says the two- to three-hour procedure for Chiari malformation is safe, and new approaches have made it even safer. In general, the process involves making a small incision near the base of the skull that goes down between the muscles and exposes the occipital bone down to the foramen magnum. From there, the arch of the C1 (first) vertebra is exposed so it can be shaved enough to allow for decompression. Though surgeons may remove the entire C1 arch in Chiari surgery, Dr. Friedlander prefers the shaving method because it’s a smaller operation that causes less pain and reduces the risk of spine instability, a rare occurrence.

    In addition to bone decompression, Dr. Friedlander also opens the dura, uses electrocautery to reduce the size of the cerebellar tonsils to relieve pressure, and separates them so he can assess whether a patient has Chiari-related arachnoid adhesions or membranes blocking the free flow of CSF. “I don’t believe the patient has been fully treated unless all pathways are opened to ensure free flow of CSF,” he says. (He also acknowledges that some controversy exists among Chiari experts about the extent of the surgery.)

    While Labuda spent five days in the hospital following his surgery, today Dr. Friedlander says his patients typically stay just one or two nights before being discharged. He recommends they take things easy and avoid any straining or lifting more than 5 to 10 pounds for about six weeks. “We see them two weeks after surgery, and if there are no issues, we see them again in six months for an MRI,” he says. “Most people are fine, never need to come see me again, and have a normal life.”

    Chiari Malformations in Children

    While most Chiari malformation diagnoses occur well into childhood or adulthood, Heather Nebel’s son, Carter, showed symptoms at birth. Hours after he was born, doctors were concerned with his fast-paced breathing and soon diagnosed him with aspiration pneumonia, a condition they told her can develop as newborns breathe in fluids during birth. But his symptoms grew in the following weeks to include frequent coughing and gagging, which often woke him up when he was sleeping and terrified his mother.

    It took more than 10 challenging months filled with numerous hospital stays, continued choking, missed milestones (including the ability to eat solid food), sleep and breathing studies, appointments with specialists, and even an unnecessary surgery for “floppy epiglottis” before an MRI confirmed a diagnosis of Chiari malformation.

    “The doctor wrote it on the back of a business card because there was no pamphlet, and she told me not to Google it,” Nebel recalls. “That was mind boggling to me, because she also scheduled us to see a neurosurgeon the next month. I remember being very scared and upset but also happy we knew what it was.”

    Dr. Ahn says the manner in which Carter was diagnosed is atypical: “More commonly, children are older, involved in activities, and can tell us about the characteristic headache in the back of their head.”

    Despite Carter’s unusually early diagnosis, Dr. Ahn says the boy’s symptoms were typical for Chiari. “When the cerebellum compresses structures because the space is too small, one of those structures could be the brainstem, which controls basic functions like swallowing and breathing,” he notes.

    Carter underwent surgery within months of his diagnosis, and though Nebel called the experience harrowing, “the minute he woke up, I noticed he wasn’t choking and gagging, and he ate a Teddy Graham the nurse brought him. Within days, he ate everything in sight, and new worlds were opening up.”

    Now 14, Carter mostly lives like a typical teenager, enjoying family activities, weekend camping trips, choir and theater practices, and hanging out with friends. However, he does still have some Chiari-related symptoms, such as difficulty regulating his body temperature, leg pain, low muscle tone, headaches, and slow processing time, which prompted him to do school from home this year. “It’s different, but now he has more energy to focus on his work rather than having to put so much effort into switching classes,” Nebel says.

    From diagnosis to daily life, Labuda and Carter have had different experiences with Chiari, and others living with the condition likely have their own unique story to share. Lack of awareness among both patients and physicians continues to be a problem, however, and Dr. Friedlander recently published a review in the New England Journal of Medicine he hopes will help patients get a correct diagnosis more quickly.

    “Some people have had typical Chiari symptoms for years but haven’t been diagnosed because many doctors don’t know about it,” he says. “While Chiari doesn’t kill patients, it has a great impact on quality of life, and surgery can greatly improve that.”


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  • What Parents and College Students Need to Know About Meningitis Vaccines

    What Parents and College Students Need to Know About Meningitis Vaccines


    Illustration by Gracia Lam

    Connie Ingram’s son, Jackson, went to bed one night after experiencing severe nausea, vomiting, and fever. When the then-19-year-old college student awoke the next day, he was disoriented and unresponsive.

    “I still have flashbacks to him kind of looking around with blank eyes, reaching for something next to the bed like he was trying to find something,” recalls Ingram, who lives in Highland Ranch, CO. She called for an ambulance, and watching the EMTs treat her son “was so surreal,” she says. “I was so focused on his face, hoping he was going to respond to them.”

    It turned out that Jackson had bacterial meningitis, a condition in which the meninges, the protective membranes that surround the brain and spinal cord, become inflamed. After time in the intensive care unit and occupational and physical therapies, Jackson was able to walk on his own again, albeit with some pain and weakness that abated over time.

    His cognitive recovery took longer, though, as his reading comprehension and memory suffered, Ingram says. Jackson had to take his first-semester final exams in the spring rather than December but had recovered enough by then to stay on track academically. He graduated from college with honors, scored high on his LSATs, and “killed the law boards,” Ingram says. While he overcame many of his cognitive issues, the photographic memory he had in childhood never came back.

    Both bacteria and viruses can cause meningitis. Patients with viral meningitis can experience memory loss, lack of concentration, and issues with thinking or problem-solving. A 2024 study published in Frontiers in Neurology found that within two years of having viral meningitis, 67 percent of patients continued to have persistent signs and symptoms of the disease, with 36 percent experiencing subjective cognitive impairment.

    Bacterial meningitis, though, is “the really dangerous form,” says Matthijs Brouwer, MD, PhD, professor of neurology at Amsterdam UMC in the Netherlands. About 1 in 6 patients die, and it can cause severe inflammation of the brain and swelling within the skull. Roughly 10 to 20 percent of patients with bacterial meningitis have a stroke and subsequent speech and movement problems, he says.

    Several kinds of bacteria can cause meningitis, including meningococcus, listeria, and pneumococcus, according to the U.S. Centers for Disease Control and Prevention (CDC). Young adults who live in close quarters like college dormitories and residents of military barracks in particular are at risk for the meningococcal form of bacterial meningitis.

    Clinicians typically treat bacterial meningitis with intravenous antibiotics along with a corticosteroid to help reduce inflammation while they determine which type of the disease the patient has, since early recognition and treatment are key for recovery. About 30 to 40 percent of survivors end up with neurologic complications, such as hearing loss resulting from nerve damage, trouble concentrating, sensitivity to sound or bright lights, and headaches. Recovery can take time—or not happen at all.

    “Any time there’s an infection of the central nervous system and the brain, there can be both short-term and longer-term risks to cognitive health,” says Thomas Murray, MD, PhD, professor of pediatrics at Yale School of Medicine and an infectious disease specialist. “Certainly in the short term, people can present with changes in their mental status, they may not be aware of their surroundings as well, [and] they may not recognize people.”

    Two vaccines, however, offer hope in the form of protection against certain types of meningococcus. One vaccine targets four of the six major serogroups (bacteria with a common antigen) associated with bacterial meningitis—A, C, W, and Y—while the other vaccine targets just serogroup B. (The sixth serogroup is known by the letter X.)

    Vaccination can help others avoid what Andy Marso experienced after contracting the disease in April 2004 as a 22-year-old senior at the University of Kansas. He had flu-like symptoms at first, but other troubles soon followed.

    “I noticed that my feet hurt, and I had this weird, prickly, pins-and-needles pain in my feet, like when your foot goes to sleep and you try and walk on it,” recalls Marso, who now lives in Lakeville, MN. He developed a rash, too—a cardinal symptom of menigococcal meningitis—and ended up at the hospital, where his lungs failed and he went on a ventilator. When his limbs began to die, he underwent debridement, during which dead, damaged, or infected tissue is removed, which saved some of his limbs. He now walks with metal leg braces.

    Youth at Risk

    When Alicia Stillman’s daughter, Emily, developed a severe headache that ibuprofen didn’t relieve, she went to the hospital, where doctors initially treated her for a migraine. But Emily, a 19-year-old college sophomore, had meningitis B. She started to become more confused, and her brain rapidly swelled. The swelling never went down, even after a craniotomy, and she was declared brain dead.

    “I said to her, ‘You go. You be at peace, and I will figure out what happened,’” Stillman recalls about that February morning in 2013. “I found out how I was going to live my life without my daughter but with her [still] in my life, because I talk about her every day in the work that I do.”

    From that deep loss, Stillman found a new purpose. She and her husband created the Emily Stillman Foundation soon after their daughter’s death to advocate for meningitis education and prevention. “In my eyes, I didn’t have a choice,” says Stillman, of West Bloomfield, MI. “I didn’t fathom how I was going to go on with my life, but I just really believe that this was my calling.”

    Stillman later teamed up with another mother, Patti Wukovits—whose daughter, Kimberly, died from meningitis just a week before her high school graduation—to launch the American Society for Meningitis Prevention. And today, prevention is possible thanks to groups like theirs and the vaccines, which have made an impact. In 2005, the Advisory Committee on Immunization Practices recommended that the ACWY vaccine be routinely used in children 11 to 18. Nationwide, the number of those infections then dropped 76 percent among ages 11 to 20 from 2006-10 to 2011-15, according to a study published in Clinical Infectious Diseases in 2017.

    The disease continues to impact young people, though. Peak incidence occurs at ages 18 and 19, with college students more at risk than non-students, according to a 2021 report in Human Vaccines and Immunotherapeutics. Between 2007 and 2017, as many as 1 in 5 colleges in the United States experienced an outbreak of meningococcal disease within their own institution or one nearby, the study notes. College-associated outbreaks also accounted for about 20 percent of all meningococcal outbreaks in the country.

    Doctors say outbreaks are more likely among college students because they come together from across the world to live in residence halls and eat together in cafeterias. Because meningitis passes through respiratory secretions, smoking and kissing can increase risk of transmission. Ingram’s son had shared juice with a friend in the college cafeteria, and both ended up coming down with meningitis at the same time.

    “Put a lot of young people together and exchange bacteria, then there’s a risk of outbreak or single cases,” Dr. Brouwer says.

    Raising Awareness

    While vaccination can help protect this vulnerable population, Stillman and others have found that many parents do not know that different types of meningitis vaccines exist. And often, colleges and universities only require students, especially those living in residence halls, to receive the ACWY vaccine but not the one for meningitis B.

    That was the case for Ingram’s son, Jackson. When it came time to fill out his medical paperwork ahead of his freshman year of college, she let him handle it himself. “I thought, he’s a big boy, almost 19, so I let him go to the doctor by himself,” she says. “Because the meningitis B vaccine wasn’t required—it was blacked out on the form—the doctor didn’t think to ask about it, and Jackson didn’t think to ask about it.”

    Both Stillman and Wukovits’s daughters were vaccinated against meningitis A, C, W, and Y but died from meningitis B before that vaccine existed. It only became available in the United States in late 2014, and despite the potentially brutal consequences of the disease, the CDC does not “routinely recommend” it for all adolescents. (The CDC does suggest, however, that adults considered to be high-risk—including military personnel and those traveling to regions with higher incidences of the disease, such as sub-Saharan Africa—receive the meningitis B vaccine.)

    The type B vaccine typically is given to 16 to 18 year olds in two or three doses a few months apart. Children usually receive the ACWY vaccine in two doses, generally around 11 and again around 16.

    “For the most complete protection, I would recommend giving teens both meningitis vaccines even though the meningitis B [vaccine] is optional on the CDC schedule,” notes Allison Ford Messina, MD, chief of the division of infectious disease at Johns Hopkins All Children’s Hospital in St. Petersburg, FL. “This vaccine is so important because this disease is so fatal, and there is almost no time to intervene once your child becomes ill.”

    Kiran Thakur, MD, an endowed associate professor of neurology and director of the neuroinfectious diseases program at Columbia University Irving Medical Center, says “significant data” show the vaccinations have reduced the number of meningitis cases in the United States. “Among those aged 16 to 22, incidence declined by approximately 35 percent annually,” she says. “These reductions are attributed to both direct protection and herd immunity effects of the vaccine.”

    Dr. Thakur says the push for mandated vaccines gained momentum after several high-profile outbreaks; 27 states now require college students to receive the ACWY vaccine. Many colleges and universities mandate that vaccination, too, with some also requiring the vaccine for type B—the serogroup behind most recent campus outbreaks, Dr. Thakur notes.

    Six states do not mandate vaccination but require colleges and universities to provide information about meningitis vaccines to students, according to the National Conference of State Legislatures, and most states that require vaccination allow for medical and/or religious exemptions.

    Getting vaccinated is “the biggest no-brainer because of how fast the illness progresses,” Marso says. “It’s not the sort of thing where you can say, ‘Well, if I get it, then we’ll worry about it.’ I personally know probably a half-dozen families who have lost loved ones to this, and their loved ones died so quickly they didn’t even get to the hospital in time to say goodbye. For me, it was 24 hours from perfectly healthy to almost dead.

    “You can’t wait for this one. You need to prevent it on the front end because even if everything goes right for you in terms of the care you receive, you can still die, you can still end up with losing limbs, [and] you can lose your hearing [or] your vision because of this one bacteria.”


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