Personal Health

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A Mediaplanet Guide to Bone Health, Neurological Disorders, & Pain Management

JUNE 2022 | FUTUREOFPERSONALHEALTH.COM

Personal Health

Frances Jensen The president of the American Neurological Association talks about the link between environmental contaminants and neurological disorders

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The OA Alliance shares tips for managing osteroarthritis joint pain

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How to Keep Your Bones Healthy and Balanced Unlike our skin or our hair, we don’t see our bones all the time, so we do not notice that bone tissue is constantly remodeling or turning over. As old bone tissue is broken down, new tissue is supposed to take its place. There are many factors that can disrupt this process. When bone remodeling gets out of balance, more bone is broken down than is created. That results in a loss of bone density, also known as bone mass. When the bones lose density, they can weaken and become more likely to fracture or break. They can break due to falls from standing height or even due to an awkward twist or a hard sneeze. Two of the most important factors that lead to unhealthy bones are age and, for women, the loss of sex hormones around menopause. There are many

Nancy E. Lane, M.D. Director, Center for Musculoskeletal Health, University of California Davis School of Medicine

other disruptive factors that can explain weakened bones. These include: • Poor nutrition • L ack of physical activity • Smoking • Alcohol use • Certain medical conditions and medications For some of these factors, we can take action to minimize our risk: • Eat a healthful diet rich in calcium, protein, and vitamin D

• Get plenty of exercise, especially weight-bearing activities such as running, dancing, jumping rope, or racquet sports • Work on your balance to avoid falls • Quit smoking • Limit alcohol to no more than one drink a day for women or two for men Regardless of your specific risk factors, you need to be aware of how they affect your bone health. Your healthcare provider might use a tool called FRAX to evaluate your risk of fractures. If you are 45 or older, you can use the consumer-friendly American Bone Health Fracture Risk Calculator™ at www.americanbonehealth.org/ calculator. Even though we can’t see our bones, knowing what puts them at risk can help us keep them healthy and balanced. n

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Publisher Razelle Amante, Collin Haber, Helen Chappell Business Developer Katie Konfino, Adrienne Macaluso Managing Director Jordan Hernandez Lead Designer Kayla Mendez Designer Keziah Makoundou Lead Editor Dustin Brennan Copy Editor Taylor Rice Director of Content and Production Jordan Hernandez Cover Photo Daniel Burke Photography and Video All photos are credited to Getty Images unless otherwise specified. This section was created by Mediaplanet and did not involve USA Today.

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recommendations. Precision nutrition works to understand how various processes in our bodies and environments interact and how we can use this information to optimize diets and make targeted dietary recommendations to improve health and well-being.

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Why one-size-fitsall doesn’t work The problem with one-sizefits-all is just that — it does not address specific needs or habits that are based on personalized data. Many studies have found the benefits of personalized nutrition to be plenty, including the development of

healthier eating habits. Onesize-fits-all ignores not only the varying lifestyle factors that make us all different, but it also fails to acknowledge our unique genetic codes and biological needs that can change the way our bodies intake various nutrients. Precision nutrition is the way forward Precision nutrition changes how we approach individualized health and recognizes that everybody’s nutrient recommendations are different and unique. It is a revolutionary way of studying nutrition science that recognizes individuality rather than trying to fit every person into one category. This method of research and analysis will shape the future of medicine and how we think about personalized health. Precision nutrition allows for truly personalized dietary

recommendations and plans tailored to an individual’s specific requirements. These will help to optimize the quality of life and encourage peak performance starting at the cellular level. Precision nutrition can take into account everyone’s different needs rather than using general population data to make recommendations that might not be useful. By using lifestyle data, DNA, and blood test results, Rootine creates a truly personalized and custom-tailored nutrition platform that delivers micronutrients in the exact doses that your body needs. Rootine is on the cutting edge of the most advanced technology to interpret, analyze, and match health data that can improve health and well-being. n This article has been paid for by Rootine. Rachel Soper Sanders, CEO and Co-Founder, Rootine

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The Answers to Lupus Lie Within You Lupus is a serious autoimmune disease, which means your immune system attacks healthy cells by mistake. It’s also one of the most common autoimmune diseases.

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upus affects each person differently, with symptoms that are sometimes hard to detect and differ from patient to patient. This makes the disease hard to diagnose and arriving at effective treatments very challenging. It’s even been called “the disease with 1,000 faces.” But many more faces and minds work with the Lupus Research Alliance (LRA) to improve

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treatment and, ultimately, cure lupus. The most common symptoms of lupus are extreme fatigue, skin rashes, joint pain, and unexplained fevers. Up to 90% of people with lupus will have arthritis, which is defined as inflammation or swelling of the joint lining. The most common symptoms of arthritis are stiffness and aching, most often in the hands and wrists. Symptoms of arthritis can

come and go and move from one joint to another. Today, doctors have more choices to help patients manage lupus effectively because the range and effectiveness of treatments have increased in recent decades. Current treatments and medications include: • Nonsteroidal anti-inflammatory drugs (NSAIDs) that are used to treat joint or chest pain, fever, and swelling

• Hydroxychloroquine, an antimalarial that can treat fatigue, joint pain, skin rashes, and lung inflammation •C orticosteroids, which rapidly reduce inflammation • Immunosuppressive therapy, which is sometimes prescribed to restrain the overactive immune system by blocking production of immune cells •B elimumab (Benlysta®), a

B-lymphocyte stimulator (BLyS) protein inhibitor, which may reduce the number of abnormal B cells thought to be a problem in lupus • Voclosporin (LUPKYNIS), the only FDA-approved oral medication specifically for lupus nephritis • Anifrolumab-fnia (Saphnelo™), a first-in-class type I interferon receptor antagonist for systemic lupus erythematosus The LRA helped support some of the early research on some of these therapies and many promising drugs in development. Today, the LRA is funding work that will usher in truly personalized medicine where each treatment is unique. Visit LupusResearch. org to learn more. n Lupus Research Alliance

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Could Your Joint Pain Be Osteoarthritis? Although there is no cure for osteoarthritis, joint pain and symptoms can be managed through treatment, lifestyle changes, and education. While there are estimated to be more than 100 types of arthritis, osteoarthritis (OA) is the most common form, affecting 32.5 million U.S. adults. Common symptoms of OA include: • J oint pain • S tiffness or limited range of motion after getting out of bed or sitting for a long time • Clicking or cracking sounds when a joint bends • Mild swelling or tenderness in one or more joints • Pain that is worse after activity or toward the end of the day Stiffness, swelling, and pain in your joints from OA should not keep you from your favorite activities. There is a common myth that being active could make your joint pain symptoms worse, but the opposite is true. Surprisingly, doing simple exercises to keep your body moving can help reduce your pain and stiffness. Low-impact activities can keep you moving and help build strength. Whatever you choose, start with just 10-15 minutes or less and build up your endurance over time. Explore oaaction.unc.edu/JOINTPAIN to learn about treatment and lifestyle changes that can help you get moving on a path to less joint pain. Nicholas Beresic, Ed.D., Director of Communications, Osteoarthritis Action Alliance/UNC Thurston Arthritis Research Center

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Do you have pain in your joints? It could be osteoarthritis (OA), the most common form of arthritis. Hereʼs the good news: There are proven actions YOU can take today to improve your pain. Learn how you can prevent and manage OA today at http://oaaction.unc.edu/. The Osteoarthritis Action Alliance is a national public health coalition seeking to increase awareness, education, and resources to help people prevent and manage osteoarthritis.

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Calcium and Vitamin D Are Key to Keeping Bones Healthy The Bone Health and Osteoporosis Foundation (BHOF) is committed to educating all Americans that a diet including calcium and vitamin D is critical to building strong, healthy bones and to helping to prevent osteoporosis. Approximately 10 million Americans aged 50 and over have osteoporosis, and another 44 million have low bone density, placing them at an increased risk for bone breaks or fractures. Most people are not aware that fractures related to osteoporosis are not part of normal aging and are responsible for more hospitalizations than heart attacks, strokes, and breast cancer. “Calcium and vitamin D are two essential nutrients necessary for building strong, dense bones when we’re young and for keeping them healthy as we age,” says Dr. Andrea Singer, BHOF’s chief medical officer. Calcium also enables our muscles to contract, our heart to beat, and nerves to send

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messages between the brain and other parts of the body. An estimated 99% of calcium in our bodies is in the bones and teeth. Since our bodies do not produce calcium, it is an absolute must to get enough of this mineral by carefully selecting the foods we consume. When we don’t get sufficient amounts of calcium, it is taken from our bones, which may cause them to weaken. Vitamin D also plays an important role in protecting our bones, both by helping our bodies absorb calcium and by supporting muscles needed to avoid falls. It is critical for children to get enough vitamin D to help build strong bones, and adults need it to keep their bones dense and healthy. Without adequate vitamin D, we’re more likely to break bones as we age. Calcium-rich food Food is the best source of calcium. Dairy products, such as milk, yogurt, and cheese, are high in this nutrient. Green vegetables, including broccoli and col-

lard greens, along with beans like blackeyed peas, white beans, and soybeans, also are rich in calcium. Look for added calcium listed on labels of some juices, breakfast foods, soy milk, almond milk, breads, and cereals. If you’re not getting the recommended amount from food alone, you may need to complement your diet by taking multivitamins or supplements. Sources of vitamin D Our skin makes vitamin D with exposure to sunlight and stores it in fat for later use. How much vitamin D our skin can produce depends on time of day, season, latitude, skin pigmentation, age, and other factors. Regular, limited sun exposure is one way to get vitamin D. To maintain healthy blood levels, people generally require about 10-20 minutes of midday sunlight, several times per week. People with darker skin may need more than this. Your exposure time should depend on how sensitive your skin is to sunlight.

There are, however, many reasons people do not make enough vitamin D. As we age, our skin loses its ability to generate vitamin D. People who live in cities or in institutional settings like nursing homes spend too little time outdoors. Even those who do spend time outdoors — even for very short periods of time, as mentioned above — often use sunscreen to prevent skin cancer, which is important. Sunscreen with an SPF as low as 8 reduces vitamin D production by 95%. Vitamin D is found in foods including fatty fish like wild-caught mackerel, salmon, and tuna. It’s also in herring, sardines, egg yolks, and mushrooms. Vitamin D is often added to milk and other dairy products, orange juice, soy milk, and fortified cereals. Be sure to check the food label to see if vitamin D has been included in a particular product. It is very difficult to get all the vitamin D we need from food alone. Most people must take vitamin D supplements to get enough to support bone health. Please see the link below for recommendations on supplements. BHOF’s calcium and vitamin D overview shares excellent information on the importance of these vital nutrients in addition to how much you need, what the best sources are, and details about supplements. Visit www.bonehealthandosteoporosis.org for user-friendly information about bone health for people of all ages. n Andrea J. Singer, M.D., FACP, CCD, Chief Medical Officer, Bone Health and Osteoporosis Foundation

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The Extraordinary Gift of Clinical Trial Participation

Every year, millions of people choose to participate in clinical research and become partners in the process of developing new medical interventions. We call these brave individuals “medical heroes” in the ongoing battle to understand, fight, and cure disease. Medical heroes can be found everywhere. They are moth-

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ers and fathers, siblings, children, friends, colleagues, and everyday people who have chosen to give the extraordinary gift of participation in clinical research. Their decision to participate is an altruistic gift that always carries risk, usually offers no direct personal benefit, yet contributes profoundly to collective knowledge about the nature of disease, its progression,

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and how to better treat it. Ultimately, future generations are the direct recipients of this gift. Most people know very little about clinical trials until they face the sudden and often unexpected prospect of a serious and debilitating illness for which no medication is available or adequate. Typically, patients, their families, their friends, and their

healthcare providers must gather information quickly to make decisions about whether to participate. This rush to navigate the unfamiliar terrain of clinical trials invariably feels overwhelming and confusing. Appreciating medical heroes In 2004, the Center for Information and Study on Clinical

Research Participation (CISCRP) was founded to provide outreach and education to those individuals and their support network considering participation in clinical trials. Based in the Boston area, this nonprofit organization focuses its energy and resources on raising general awareness, on educating patients and the public, and on enhancing study volunteer experiences during and after clinical trial participation. Our many events and services are designed to improve public and patient literacy, to engender feelings of empowerment and control, to ensure more informed decision-making, and to recognize and appreciate medical heroes. This special supplement also plays an important part in raising awareness and literacy. It is a reference resource offering an introduction to clinical trials and to thanking the millions of people and the clinical research professional community who, together, help advance medical knowledge. At the present time, nearly 4,000 experimental drugs and therapies are in active clinical trials, and that number continues to grow as improvements are made in detecting disease, in discovering new medical innovations, and in understanding and addressing the root cause of acute and chronic illnesses. At the very heart of all this promising clinical trial activity are medical heroes to whom we owe our deepest appreciation for their profound gift of participation. n Ken Getz, Founder and Chairman, CISCRP

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SPONSORED

Decentralization: The Future of Clinical Trials Today’s post-pandemic clinical trial landscape will require a patient-centric supply chain strategy. It is no argument that the impact of the global pandemic on the pharmaceutical and life science industries has been direct and cataclysmic. However, it provided a crucial inflection point on the future of how we conduct clinical trials, intensifying the essential need for operational resiliency and agility. After more than 80% of ongoing clinical trials were disrupted, the industry quickly pivoted, accelerating the development and implementation of decentralized and hybrid clinical trials. “Enrollment in clinical trials dropped drastically as patients were quarantined or reluctant to travel, making trips to hospitals or research sites incredibly difficult, if not impossible. As a result, the industry, while historically slow to embrace new solutions, adopted decentralized models; either hybrid or fully virtual at an unprecedented pace due to COVID-19,” comments Ariette Van Strien, president of Marken, a market-leading supply chain and hybrid DCT solutions provider. New challenges While DCTs aren’t a fit for every therapeutic indication, they offer many remarkable

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advantages over traditional trial models: the burden is much less for participants, there’s access to a much broader and more diverse patient pool, and the ability to scale from a geographical perspective. DCTs come with their own set of challenges and complexities, however, supply chain strategy is perhaps the most critical (and highly underestimated) aspect. “DCT trial teams are faced with management of multiple vendors and a complex web of suppliers — and it is critical to find a logistics partner that offers flexible, end-to-end supply chain services,” notes Van Strien. That’s an advantage for Marken, which specializes in the delivery of single-source clinical trial logistics solutions and patient centricity while leveraging the UPS Healthcare division — the largest supply chain provider in the world. Marken’s solutions To continue to drive improvements in clinical trial recruitment, retention, and adherence and allow patients to continue trial enrollment in the convenience of their own homes, Marken specializes in patient-centric services such as Direct-To/From-Patient with a global nursing network for home healthcare solutions. Understanding local regulations and a heightened focus on technology integration and data

security adds to Marken’s ability to improve the overall patient experience. “A strategic partner like Marken provides solutions that offer advantages for both patients and clinical trial researchers,” says Van Strien, “including global patient support.” Marken provides direct communication lines between patients and our experts with dedicated Patient Communication Centers (PCC) for 24/7 end-to-end support along each step of the care journey. Located in Philadelphia, Edinburgh, and Ciudad de México, these state-of-the-art centers support 14 different languages and serve as single points of contact for trial participants. Marken’s home healthcare services have developed a leading-edge 21CFRPart11-, HIPAA-, and GDPR-compliant home healthcare technology. The cutting-edge technology makes collecting real-time data easy, and lets users see the overall study progress as well

as specific patient histories, all using secure technology. Marken also recently partnered with leading decentralized clinical trial technology provider THREAD for seamless site interactions, and continues to partner and integrate with major companies in the digital and decentralized trial space including existing clinical trial platforms like EDC and IRT solutions. These partnerships solidify Marken’s unique position to support hybrid and virtual trials, as well as associated telehealth needs. Looking ahead Evolution in this industry is a matter of survival, and for the last ten years, while some solutions were considered too risky, now the risk is not adopting them soon enough. There is little doubt that DCTs are here to stay, and many of the adaptations that took place during the pandemic will last and continue to support improvements and enhancements in the clinical trial landscape for many years to come.

Additionally, new technology advancements, such as artificial intelligence (AI) and big data, focus on digitization and data interoperability that will further drive a revolution in healthcare, transforming clinical trials and fueling modern drug development. Van Strien believes we’re still just beginning to see the impact of DCTs. “Decentralization may be the future of clinical research. Marken is committed to staying one step ahead as hybrid and virtual trials continue to accelerate. Not just from a logistics or technological perspective, but to support patients throughout the entire healthcare journey.” n Jeff Somers

Discover more about how Marken delivers solutions for tomorrow’s clinical trials at marken.com/capabilities/ direct-to-from-patient/

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Discussing the Latest Innovations in Neurology Despite inevitable slowdowns from the COVID-19 pandemic, the field of neurology has seen significant advancements in things like novel therapies and patient treatments.

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onrad “Chris” Weihl, M.D., Ph.D., is an academic neurologist who is interested in inherited neuromuscular disorders, or rare diseases, and who splits his time between seeing patients and doing research involving genetics, molecular mechanisms, and, ultimately, developing potential therapeutics. He is also the chair of the Scientific Programming Advisory Committee for the American Neurological Association (ANA) annual meeting, which gives him a bird’s eye view of upcoming trends in the field of neurology.

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According to Dr. Weihl, the ANA annual conference is for neurologists who are interested in understanding the cutting-edge research related to multiple disciplines of neurology. “People are able to present and discuss their research,” he says. “They also cover interesting patients that may expand our understanding of certain disease states, and participants are also able to talk about challenges within both the care and treatment of patients, but also of advancing their own careers.” Trends in neurology Conferences are a great place

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for professionals who are looking to learn more about the overall trends happening in their fields. One such trend noticed by academic neurologists like Dr. Weihl is in the treatment of neurological diseases. He notes that some of the most exciting research that has been developing in recent years relates to diseases that were previously thought to be untreatable, like spinal muscular atrophy. “There is now a gene therapy treatment for that disease,” Dr. Weihl says. “That’s a disease that was thought to be untreatable when I was in training, and even as recently as five years ago.

Ultimately, many of those patients end up dying, but now we have a therapy we can intervene with.” One of the sessions that will be covered at the ANA annual meeting involves innovations in ALS care. “ALS falls into that category of diseases that were thought to be untreatable, and we’re now seeing therapies that are potentially coming to fruition,” Dr. Weihl says. “In the next 5 to 10 years, I think we’re going to see therapies for this disease.” Slowed by the pandemic COVID-19 hit academic neurologists just like it did

everyone else. According to Dr. Weihl, the pandemic has affected junior faculty in particular, who may be in a vulnerable part of their career. Despite these challenges, he still maintains neurology is an exciting field to start a career in. “This is probably the most exciting time to go into the field of neurology,” he says. “In the 1970s and ‘80s, we talked a lot about cancer and treating cancers with novel therapies, and that’s really where we are now in neurology. New therapies are emerging all the time, and it’s extremely exciting.” n Lauren Hogan

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Virtual-First Clinical Trials & Alzheimer’s: Supporting Patients & Care Partners

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here is an excruciating duality to Alzheimer’s disease: Patients may only have flashes of recognition that their mind is deteriorating, while caregivers watch their loved one slip away in slow motion. The emotional toll is accompanied by practical healthcare considerations with serious implications. It can become increasingly difficult to bring people suffering from Alzheimer’s to doctor’s appointments due to the mental and physical impacts of the disease. While there are currently

no cures for Alzheimer’s, virtual-first and hybrid approaches to clinical research are providing new avenues for clinical trial participation, with studies that meet patients where they are: at home, a nursing care facility, or a “third place.” Decentralized clinical trials A virtual-first or decentralized approach to clinical trials uses digital health tools to monitor heart rate, blood pressure, and other health targets. Participants can be seen by clinical research nurses in a location of their (or their care partner’s) choosing. Eliminating geo-

graphic and logistical burdens can make it easier to participate in clinical research as a healthcare option. “At Lightship, we are focused on providing patients and care partners with as much flexibility as possible while providing superior clinical trial care,” says Marieke Cajal-Berman, Ph.D., Lightship’s senior director of patient engagement. “Many participants can take part in trials conducted via telemedicine for some doctor visits, or nurses may visit them at home, which reduces the burden of travel to and from a clinic or hospital.”

The third place Having a “third place” for patients to be seen provides another option for people who may not be comfortable with a home visit. Mobile research clinics, which are fully functional clinical study facilities, are one such example. They can be driven to meet a participant outside of their home or at another location. These vehicles bring clinical trial opportunities to potential participants in diverse neighborhoods, rural communities, and other underserved populations. “There are many ways to provide patients and

care partners with choice around clinical trial participation,” says Marieke. “Making Alzheimer’s clinical studies more accessible increases the diversity of the participants involved, which helps advance medical science and create better outcomes for all.” n Melissa E. Daley, Associate Director, Marketing, Lightship

To learn more, visit lightship.com

The Importance of Telehealth for Rare Diseases Healthcare must reflect all of the opportunities of telehealth, but especially so for those suffering from rare diseases. Before the pandemic, telehealth made up less than 0.01% of healthcare visits across the United States. By mid-April of 2020, that number had skyrocketed to 69% welcome news for patients living with rare diseases. For the past two years the team at the National Organization for Rare Disorders

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(NORD) has been working to help the rare disease community safely navigate the pandemic. Patients and caregivers have joined us to advocate for expanded access to telehealth, and hundreds have told us about its positive effects. These include helping them feel safer, eliminating days of travel to and from doctor visits, and moving forward with clinical trials that would have otherwise been delayed. The importance of telehealth In the case of many rare dis-

eases, there are only a handful of experts nationwide, or even worldwide, with expertise in certain conditions. In the absence of telehealth, patients travel long distances to access their treating provider. Such travel can be costly, often results in missed work or school, and presents logistical challenges that can be overwhelming or insurmountable when there is severe burden of illness. Not least of all, travel can pose health risks because many patients with rare diseases are immunocompromised.

Knowing about the uphill challenges that exist, it is easy to understand how COVID-19 has had a significant impact for more than 25 million Americans living with rare diseases. During the pandemic, nearly 8 in 10 rare disease patients experienced canceled medical appointments. Despite disruptions to care during the pandemic, a ray of hope emerged with the rise of telehealth: 83% of rare disease patients were offered a telehealth visit by their provider, 92% of those who had

a telehealth visit described it as a positive experience, and 70% would like the option for future medical appointments. These numbers show that the demand for telehealth among rare disease patients is strong. With continued information sharing and collaboration among experts, scientists, healthcare workers, and advocates, together we will come out stronger. n Lisa P. Sarfaty, M.P.H., Director of Strategic Planning, National Organization for Rare Disorders (NORD)

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Read more about personal health at futureofpersonalhealth.com



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e’re constantly breathing, touching, and ingesting chemicals from the air, from our food, and from soil and surfaces. Collectively known as our “exposome,” we’re learning that these exposures may be a major factor in neurological disease. While most of us have heard of environmental contaminants causing asthma or cancer, neuroscientists are discovering how exquisitely sensitive the nervous system is to them. An under-recognized threat From autism to Alzheimer’s disease, from ADHD to multiple sclerosis, many neurological disorders are on the rise. Chemical exposures may play a part. Consider cognitive function: In 2020, NYU researchers estimated that exposures to chemicals including lead, methylmercury, certain pesticides, and flame retardants have affected IQs across the United States, causing more than 700,000 cases of intellectual disability and the loss of more than 160 million IQ points in recent decades. There’s also evidence that chemical exposures can increase the risk of diseases like dementia, Parkinson’s, and ALS. And that’s just what we know so far. While regulations are helping combat some exposures, we have yet to understand some of the newer environmental threats such as nanoplastics, which are now permeating our air, water, and food chains. The National Health and Nutrition Examination Survey suggests that more than half of people in the United States are exposed to detectable levels of

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Are Environmental Contaminants Affecting Our Brains? Did you know that we humans can encounter more than 80,000 chemicals in the environment? Frances Jensen, M.D., president of the American Neurological Association, explains how these contaiminants may be affecting our immune systems.

major pesticides. Since the 1940s, we’ve also seen massive production of industrial chemicals, especially in plastics. Air pollution is equally important; we breathe in tiny particles carrying chemicals that get absorbed quickly through the bloodstream or nerves. Some

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of these exposures are already linked to cancer and lung disease, but we have yet to determine how our brain and nervous systems are affected. Unfair impacts The most disadvantaged people in our society bear the

greatest risk from environmental toxins. Poverty may drive people to take highrisk jobs; live in areas where they’re exposed to road pollution, agricultural pesticides, industrial operations, or leadfilled buildings; and consume cheaper foods produced with

less regard for chemical safety. They may also be more likely to experience issues like malnutrition and chronic disease that combine with chemical exposures to amplify neurological risks. Addressing these factors would make a major difference for the neurological health of people in poverty. Tools for better solutions Environmental contaminants and chemicals can interact with each other, our genetics, and issues like stress and nutrition to impact health. Because we encounter many environmental toxins at low levels over long periods of time, it can be hard to trace their neurological effects and understand what amounts will tip the balance toward disease. Yet that’s exactly what we need to do if we’re going to address those impacts. New scientific approaches and cutting-edge tools are paving the way, including artificial intelligence, advanced measurements of how genes activate or go quiet in response to contaminants, and potential new tools to monitor a person’s chemical exposures in the workplace. We’re also getting a clearer picture of how some toxins interact biologically with the nervous system. Although there’s still a lot to learn, the science is promising. When we understand this collective and interactive “exposome” better, we can take steps to protect everyone’s neurological health. n Frances Jensen, M.D., FACP, President, American Neurological Association; and Arthur Knight Asbury, M.D., Professor in Neurology, University of Pennsylvania

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Forging Pathways in Neuroscience

Leading the way with pioneering research, clinical trials, and advanced therapies

Centers of Excellence, National Institutes of Health Research Centers, and Subspecialty Centers • Alzheimer’s Disease Research Center • Brain Performance Center

We harness the combined strength of our certified Centers of Excellence and National Institutes of Health Research Centers for people with neurological conditions. Stanford Medicine is one of the top recipients of National Institutes of Health grants in the nation.

• Brain Tumor Center • Certified Duchenne Care Center • Charcot Marie Tooth Center • Comprehensive Stroke Center • CurePSP Center of Care

The path to healing begins with our unique Circle of Care approach, which brings together a coordinated team to support patients and their caregivers—from diagnosis to treatment and beyond. Schedule an in-person or video consultation. Learn more at stanfordhealthcare.org/neuro or call 833-41-NEURO (63876).

• Cure SMA Care Center • Huntington’s Disease Society of America Center of Excellence • Lewy Body Dementia Association Research Center of Excellence • Malignant Peripheral Nerve Sheath Tumor Center • Moyamoya Center • Muscular Dystrophy Association Center • National Association of Epilepsy Centers Level 4 • Neurospine Center • Skull Base Surgery Center • Trigeminal Neuralgia Center


Knowing the Signs and Symptoms of Brain Disease Brain disease impacts 1 in 6 people, or more than 1 billion people worldwide. Many brain diseases have signs and symptoms that, if detected early, may lead to more effective diagnosis and treatment.

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ne major challenge in brain disease treatment is the time it can take between the appearance of the first symptoms and a patient getting a diagnosis. Earlier detection means more time spent treating diseases in the early stages, potentially slowing the development of the most disabling symptoms. Early signs of ALS Muscle twitching is a common early sign of ALS. This twitching is associated with weakness

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or shrinking of the muscles, referred to as atrophy. Some forms of ALS also affect muscles in the mouth and tongue, which makes it difficult to speak clearly. Early signs of MCI Signs of mild cognitive impairment (MCI) include persistent difficulty with short-term memory, including issues with language recall. Someone experiencing MCI may have trouble finding the right words during a conversation or take longer

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than usual when figuring out complex tasks. Researchers have found that people who present with mild cognitive impairment symptoms are more likely to develop dementia later in life. Forms of dementia Dementia refers to numerous conditions resulting in impaired memory, language, and other cognitive functions. Alzheimer’s disease is the most common form of dementia, but there are others with different patterns of

early symptoms. Early signs of Lewy body dementia (LBD) may involve physical symptoms like tremors or stiffness. While Parkinson’s itself is not a dementia, 20-50% of people with Parkinson’s eventually develop additional cognitive symptoms. Risk factors for strokes The No. 1 risk factor for stroke is high blood pressure. Other common risk factors include high cholesterol, smoking, and excessive drinking. Blood sugar issues and diabetes can contrib-

ute to vascular disease, which can increase one’s risk of stroke. When to see a physician If you have concerns regarding any of the symptoms above, it is best to see a physician as soon as possible. Your doctor will be able to assess whether these symptoms are simply part of the aging process or need to be investigated further. To learn about the latest brain disease research, visit americanbrainfoundation. org. n American Brain Foundation

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Experts’ Predictions for Innovations in Brain Health Three neuroscience experts share their predictions for neurology innovation and tips you can use today to improve your brain health.

Jessica Caldwell, Ph.D. Director, Women’s Alzheimer’s Movement Prevention Center at Cleveland Clinic

In June, we pause to build awareness for brain health. Why is it crucial this continues throughout the rest of the year? Jessica Caldwell: It is critical to prioritize our brain health because, in many ways, how well we do as we age is under our control. Studies have even shown that up to 40% of current cases of Alzheimer’s might have been prevented through changing lifestyle. Building healthy habits when we are young can provide immediate health benefits and increase our odds of keeping our thinking sharp as we age. Tudor G. Jovin: I think the most important thing we can do is to really make people aware that, as opposed to the past, we now have effective treatments already for neurological diseases. We all know the brain is important, and the brain and neurological

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diseases are something that define us as humans. But so far, I think we have paid, as a society, relatively little attention to improving logical diseases, because there were no effective treatments. As these effective treatments are coming out, we will become more and more aware that there are interventions that we can pursue and that more resources are necessary to refine these interventions. Brain health is something that is within our own power to achieve through simple means. It’s going back to the Latin proverb, “mens sana in corpore,” meaning a healthy mind in a healthy body. We need to pay more attention and put more effort into having a healthy body — exercising and avoiding approaches that are damaging the nervous system such as drugs, alcohol, or smoking. Diet is emerging nowadays as something that has been neglected, and cer-

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Dr. Tudor G. Jovin, M.D. Chairman and Chief of Neurology, Cooper University Health Care

tain types of diets matter and keep our brain healthy. Control of these risk factors is going to be essential for a healthy brain. What does the future of neurological care look like? Dr. Sanjay Gupta: In the world of telehealth, the doctor will always make a house call. That is, by mobile device or other technological means. Surely this is a way to improve the global health of the world. In developing countries with very little or no access to high-quality medical care, but often access to a mobile device, it has the potential to change the health outcomes for people everywhere. For developed countries, EMRs (electronic medical records) need to become standard operating procedure. Many problems with regard to safety can be traced to poor communication between internal hospital departments. These

Dr. Sanjay Gupta, M.D. Neurosurgeon and Chief Medical Correspondent, CNN

efficiencies can help patients become their own healthcare managers. TJ: I think the future is going to be individualized. First of all, I think there’s going to be a lot more emphasis on prevention rather than treatment, because based on our available genetic makeup, we’re all going to know what diseases we are predisposed to. For many of these diseases, there will be preventative measures, and for others there will be gene therapy, which has already started in a clinical resume with some very encouraging results in certain diseases. I suspect that the spectrum of treatable neurological diseases with gene therapy is going to explode in the future. We will be able to monitor the type of treatments that we’re giving with biomarkers that are going to be very effective. We will also probably have drugs that are tailored based on

our genetic makeup to cause the maximum efficacy and response. All this will be very likely individualized based on the patient’s own genetic characteristics. At the same time, I think that artificial intelligence applications and social media will allow for better access to care and better communication between providers and patients that’s also going to make a big difference in patient outcomes. What are some lifestyle habits and preventative steps that have proved beneficial for promoting brain health? JC: Today, research shows that changing lifestyle can improve brain health. Specific examples include exercising regularly, eating a healthy diet, nurturing your social circle, and making sure you regularly get learning experiences. n

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How Telehealth Is Making a Difference for Children With Rare Disorders Will the future of doctor’s appointments be from the comfort of your couch? Learn how telehealth is supporting the families of children with neurological disorders.

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elehealth has revolutionized the way families receive medical care in the United States. It has increased access to care from the convenience of patients’ homes, and for families of children with rare neurological conditions, telehealth has even more benefits. Prior to the pandemic, child neurology families in the United States waited nine weeks on average for their first visit with a neurologist. During that time, children’s symptoms worsened, families’ stress increased, and no progress was being made toward a diagnosis or treatment. With the support of telehealth, however, almost half of all patients have been able to receive a neurology appointment within a week of their request, according to a Telehealth Satisfaction Survey from

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the Child Neurology Foundation (CNF). Eighty percent of parents surveyed by CNF said the overall convenience was much better with telehealth than with in-person visits. The same is true from the clinical side, since neurologists can see significantly more patients each day without sacrificing the quality of care. While many families have used telehealth over the past two years, some are only now considering virtual visits for the first time. If your family is new to telehealth, here are some tips to have a successful visit: Understand telehealth guidelines States have different rules about who doctors can treat out-of-state. If you live in a different state than the doctor’s office, confirm that your doctor can offer you a virtual visit.

Get comfortable with the technology Familiarize yourself with your doctor’s telehealth system (often within their patient portal) and test your device’s ability to connect ahead of time. If you run into any issues, reach out to your doctor’s office to troubleshoot before the actual appointment. Prepare your questions and concerns like you would for a normal visit Have a list of medications your child takes and send it, as well as any questions you may have, ahead of time. This allows you to address your biggest concerns during the actual visit. Offer to assist during the visit Your doctor may ask you to bend your child’s limbs in a particular way or

encourage reflexes. Speak up whenever you feel uncomfortable or confused with something the doctor is requesting; it’s a learning opportunity for both you and your child’s provider. Know that your doctor is still here for you Even though you may not be able to see them in person, they still want to give you and your child the best care possible. Do not hesitate to reach out to them with your questions and concerns. These are just a few tips to help your family feel comfortable during your telehealth visit. For more resources, visit CNF’s Telehealth Hub at childneurologyfoundation.org/telehealth. n Amy Brin, M.S.N., MA, PCNS-BC, CEO, Child Neurology Foundation

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The Role of Compassion in Chronic Pain Care

As a survivor of massive trauma, Marcus Engel knows what it’s like to be on the other side of the stethescope. Today, the professional speaker and author is an expert in communicating the patient’s perspective, and advocating for increased humanity and compassion in clinical settings. Tell us a bit more about your “I’m Here” movement.

How COVID-19 Has Impacted People Living With Pain

The “I’m Here” movement is a simple reminder to healthcare professionals to provide compassionate presence to patients. When we witness another person who is suffering, the words “I’m here” are the greatest comfort we can give. Why is compassionate communication in patient care essential? Living with chronic pain is extremely difficult. When a patient arrives to a doctor’s office to treat their chronic pain, an uncaring environment or curt communication may proverbially feel like adding salt to a wound. The opposite is also true. A listening ear, an open heart, and acknowledgement of a patient’s suffering has been shown to reduce pain. In your experience, which technologies, tools, and resources have been the most effective in improving quality of life for people with chronic pain? One of the most exciting revelations of the last couple of decades is the effectiveness of narrative medicine and storytelling. There are no adverse side effects, there is no cost, and it doesn’t take an extraordinary amount of time. Actively listening to a patient’s story provides the ability for that patient to differently frame their pain and suffering, to feel seen and heard, and to know that another empathizes with their suffering.

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Right now, we are all living through exceedingly difficult times. We are staying at home, working from home, not visiting with friends or relatives, homeschooling our children, and missing many special events and parties.

living with pain. At least those socially isolating do not have to deal with the pain that causes its own unique set of problems, like difficulty sleeping, limits on movement, access to care, obtaining needed medications, and loss of friends and family.

We are basically social and need to be with others. COVID-19 has changed the way we live and how we spend our days. Just about everyone experiences the same frustrations, the same need to return to the workplace or school, see friends, plan events, and always have something to look forward to the next day. Much of what applies to the stay-at-home orders of today is exactly what it’s like when pain invades one’s life. In some sense, today’s scenario is better than

The survey says The American Chronic Pain Association recently did a survey of its members, inquiring about the impact COVID has had on their lives. When it came to asking about the impact COVID-19 had on them, we found the following: • Nearly 47% have experienced increased pain • About half report more stress and 46% say they are more anxious • More than 40% have felt isolated and 36% say they are depressed

• Almost 42% report exercising less, 34% say they are eating more, and more than a quarter are sleeping more • Well over a quarter say they are no longer able to see their healthcare provider All of these behaviors that have increased are known to exacerbate pain and erode quality of life, and need to be recognized in our overall understanding of COVID-19’s impact on people living with pain. It seems COVID has increased the challenges of life even for those who were used to being isolated. We often hear our members say, “I want my life back.” Today, I think much of the nation is saying the same. n Penney Cowan, Founder and CEO, American Chronic Pain Association

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Whether because of a minor ankle sprain or long-term back problems, pain is the leading reason Americans visit the doctor. Because pain involves so many variables, including underlying conditions, comorbidities, body chemistry, and perception of pain, there is no one-size-fits-all approach to care. What helps one person may not work for another, even if they have the same condition and symptoms. While patients might hope for a quick fix, the reality is that most people go through a process of trial and error to determine what best alleviates their symptoms. Fortunately, there is an ever-growing array of treatments available to try. This is especially true in light of the opioid crisis, which has catalyzed new research into multimodal options for relief.

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Understanding the Options for Comprehensive Pain Management Here are seven categories of pain management options, along with examples of each, to discuss with your doctor: • Self-management and lifestyle changes. Examples: pacing and activity modification, sleep hygiene, diet and nutrition, exercise, and stress reduction techniques. • Restorative and manual therapies. Examples: phys-

ical therapy, occupational therapy, massage therapy, chiropractic care, osteopathic medicine, and aquatic therapy. • Complementary and integrative health options. Examples: acupuncture, aromatherapy, herbal and vitamin products, Reiki, and music and art therapy. • Mind-body and behavioral

health strategies. Examples: counseling, cognitive behavioral therapy, biofeedback, support groups, stress reduction techniques, and meditation and mindfulness practices. • Medications. Examples: acetaminophen, NSAIDs, muscle relaxants, antidepressants, antiepileptics, medical cannabis, and opioids.

• External stimulation devices. Examples: TENS units, high-frequency impulse therapy, pulsed electromagnetic field therapy, ultrasound therapy, and vagus nerve stimulation. • Interventional procedures. Examples: injections and blocks (e.g., epidural injections, facet blocks, trigger point injections), and implanted neuromodulation devices (e.g., spinal cord stimulators, dorsal root ganglion stimulators, intrathecal pain pumps, peripheral nerve and field stimulators). For more information about the seven categories and treatments listed, visit mypainplan.org. n Emily Lemiska, Director of Communications & Educational Programming, U.S. Pain Foundation

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Parents have a lot to think about when it comes to the health of their children: colds, flu, bumps, and bruises. However, they may not consider spine health. Scoliosis is an abnormal sideways curvature of the spine. Although many people have not heard of the condition, it is surprisingly common, impacting infants, adolescents, and adults of all races, classes, and genders. Early diagnosis is the key to taking important first steps to providing treatment, like bracing, that may prevent more serious problems. “Early detection and intervention can stave off more serious issues later in life,” says Suken A. Shah, M.D., of Nemours Children’s Health, “but spine health isn’t only a youth issue. Adults of all ages can develop scoliosis in later life, which, in turn, can lead to health problems and quality-of-life impact.” In 2015, members of the international Scoliosis Research Society (SRS) completed the Bracing in Adolescent Idiopathic Scoliosis Trial (BrAIST), which supports the efficacy of bracing young people and elevates the need for scoliosis education, early detection, and public awareness. Enter National Scoliosis Awareness Month. Every June, SRS launches this awareness campaign with the goal to unite scoliosis patients, families, physicians, institutions, and businesses in partnerships of local activities and grassroots networking throughout the month. “Currently, two-thirds of states mandate or recommend scoliosis screening in schools, so it is important that friends and family members learn to recognize the signs and symptoms of the condition and know that help from their doctor is available,” says Shah, a pediatric spine surgeon and board member of SRS. “It is often parents or primary care providers who first identify the issue. Fortunately, an examination and x-ray can confirm the diagnosis, and an expert can recommend treatment, if necessary.” Learn more about Scoliosis Awareness Month at www.srs.org. Suken A. Shah, M.D., Nemours Children’s Health

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Rapper Lumidee on Wearing RA as a Badge of Honor

Nearly 20 years after her smash hit “Never Leave You (Uh Oh)” dropped, New York City-born rapper, singer, and songwriter Lumidee is speaking out about the hurdles she’s overcome as someone with rheumatoid arthritis. Tell us about how rheumatoid arthritis (RA) entered your storyline. Within the first month of me starting high school, I got rashes on my thighs, hands, and face, and then my ankles and wrists started hurting at the same time. It got to the point where I couldn’t brush my hair. My mom was battling drugs at the time, and I’d go back and forth between her house and my grandparents’ house, and no one believed me. How did you end up getting a diagnosis? On New Year’s Eve, I couldn’t breathe, and at the hospital they first diagnosed me with lupus and gave me a bunch of medications

for that. Later, based on my full group of symptoms, they said it looks like RA. How did your experience with RA progress from there? There was a doctor who told me I may never walk again, and thank God for this doctor, because he was so brutally honest. To get RA under control and get back to school, I decided to get a bilateral hip replacement at 17, and I was happy that was an option. Within a year, I was already walking. The recovery was not bad. At this point, did you get into your music? I was working with this DJ from my neighborhood, and after my hip replacements, once I was ready, I wanted to get back into the studio. Two years after surgery, my music really took off. I was still learning to walk and dance on stage, but I didn’t even care. How are you feeling now? Sometimes there will be a little

PHOTO: JOSEAN GARCIA

Scoliosis Awareness Month Highlights Need for Public Education & Understanding

stiffness with my joints, including my hands, but for the most part I feel pretty normal. For my first record deal I felt almost shameful about this. For my second record deal, which I have now, when I told them, they were like, “We never knew this. Why wasn’t this a focal point in your career? This would have been a great way to connect with people — like you’re actually a person going through health issues but you’re out here.” So, as I got older, I learned to hold RA like a badge of honor. I’m getting through this. What tips would you give to people who are struggling with bone and joint issues? If something isn’t working for you, don’t hesitate to call your doctor. The earlier you get this under control, the better it is for your future. You can still go for your dreams and whatever you want. Even when you’re having those down days, take that as your strength because you will find the blessing in that. n

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What You Need to Know About Orthopedic Surgery and Treatment

Your orthopedic healthcare professional has recommended you undergo surgery to repair a broken bone or an elective joint replacement procedure — now what? Bone and joint diseases affect nearly 75% of people aged 65 and over. Injuries that lead to bone breaks are among the most common conditions reported. For some, wear and tear make elective joint replacement surgery of the hip, knee, spine, or other joint a good option. These new, artificial parts are giving patients pain-free, active lives. Can I prevent further bone breaks after surgery? Anyone aged 50 or above who suffers a broken bone requiring surgery should determine their bone strength. Weak bones might indicate osteoporosis, a disease where bones become brittle and fragile. Ask your doctor about getting a bone density test to measure your bone strength to check for osteoporosis and the need for an exercise, nutritional, and/or treatment plan to stop further bone loss, which may help prevent another fracture. After joint replacement surgery, how can I ensure the best outcome? Your doctor may recommend using your new joint as soon as possible after surgery despite some temporary pain in the new joint. You can manage pain with medications, and you’ll likely start physical therapy right away to strengthen the muscles around the new joint. Following your doctor’s instructions will help you get back to normal sooner, increasing the likelihood that your functional status will be even better than before surgery. For more information on the U.S. Bone and Joint Initiative’s bone and joint health education programs, please visit www.usbji.org. n Rita Roy, M.S., M.D., Member, United States Bone and Joint Initiative Executive Council, and CEO, National Spine Health Foundation

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