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With all of my health challengees during a pandemic, how could I heal?

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Last year was supposed to be a “bounce-back” year, right? I was hoping things would go a little smoother and we would all know how to live a little healthier than we did in 2020 when a tiny virus spread and changed our lives forever.

As I grappled with my own struggles in the midst of this turmoil, I began to rethink what it means to break and what it takes to heal.

Can the way we recover from social trauma help us heal disease? Do I really have to believe that I can heal something in order for it to happen?

One year in my health journey I think so.

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Recorded and produced by Eryn Mathewson, Alex Stern, Allison Park and Tarek Fouda

Last time I had to heal

Before I got sick last year, the last time I had to heal was when George Zimmerman was acquitted of Trayvon Martin’s murder in 2013. My well – that intangible, deep well that enables me to find silver linings and believe in progress – has dried up. I just couldn’t understand how a grown man who had killed a black child so obviously and outrageously could go unpunished by the justice system.

I don’t remember exactly how long it took to refill the well, but it didn’t happen overnight. My father was compassionate, but he told me that the fight for racial justice would continue and that one day I would tarnish before I had to move on.

I’ve definitely been on a moped for more than a day – but protest marches against the acquittal, prayers, talking to friends and watching a new generation of civil rights activists organize have helped me. Ultimately, I believe that my desire to live in hope – not pessimism and anger (although those emotions were useful) – restored me.

I didn’t know then, but my desire and ability to heal emotional and physical setbacks were critical to a meaningful and satisfying life. During my healing, I developed a blueprint that I will likely follow for the rest of my life.

My well has dried up again

Almost a decade has passed since Martin’s death, and I looked up the definition of healing in Merriam-Webster’s dictionary: purity or integrity. “

The request? My unexpected health problems drained my well again.

I was diagnosed with idiopathic hypereosinophilic syndrome (HES) earlier this year. My body makes more eosinophils than I need and my doctors don’t know why. Eosinophils are a type of white blood cell that fight disease. They create inflammation to fight infection – which is generally a good thing. But when they overproduce, the little suckers are dangerous.In my case, I experienced many of the symptoms of this disease: fever, diarrhea, an inflamed liver. At some point, my overzealous eosinophils likely caused a heart seizure and I had an abnormal heart attack.

My medicine didn’t work well

The road to recovery was bumpy – and in the middle of it all I fell and broke my collarbone while running and had to have an operation to fix it.

And then a recent visit to my haematologist revealed that one of my medications wasn’t working as well as I thought or hoped.

My haematologist is one of my favorite caregivers. During a normal exam, we talk about exercise, his children, my siblings. As soon as we’ve talked, he’ll explain my latest test results and check the vital signs, always concise yet relaxed.

I was alarmed when our banter was brief this time. He tightened his smile and his tone turned serious in a way I had never heard before. He didn’t try to use the disappointing news as “not to worry until we know it’s a trend” as he usually does.

Without further ado, he told me that my eosinophil levels were higher than expected and that my current medication was not stable in the long run. The longer I stayed on it, especially at the high dose I was taking, the more likely I would get other serious health problems – like osteoporosis and high blood pressure.

That was when the floor fell away and whatever kept my mood going. If this man was worried, so was I.

The appointment lasted a full 15 minutes, but I walked away with a heavy head, processing that my illness might not be “beatable”. It was mine to keep. And to deal with it, I would have to take a new drug: a “safe” but annoying, difficult-to-pronounce pill with a host of potential undesirable side effects, including a warning to avoid pregnancy as it could cause birth defects.

Little did I know that this wouldn’t be the last new pill presented to me. A few months after that visit, my doctors found blood clots in one of my lungs and one of my legs. I didn’t have to go to the hospital, but I had to start taking blood thinners right away. The scariest part was that I had no idea about it. And on top of that, I tested positive for Covid-19 on the same day. This new year has not been cold!

I’m calling my team for support

Just like the Zimmerman verdict, I felt like a punch in the pit of my stomach. I am committed to exercise and nutritious diets to help me stay fit and avoid diseases like diabetes, high blood pressure, and cancer – all of which have passed through my family.

I am happy and grateful to have access to quality health care and insurance to help deal with this disease. But being diagnosed with a rare condition that I had never heard of and that has no clear cause or cure also feels unfair and so unsatisfactory. But since a protest march against HES probably wouldn’t do much, I resorted to another part of my recovery playbook – asking for support from my father, my spirituality, my friends, and my care team.

During Eryn's health journey, her father, Alfred Mathewson, a law professor and attorney, was her stone, who often donated "good dad advice."

Since the heart attack, I have seen this group as a family. They keep me encouraging before the procedures, they make me laugh, and they listen to me cry and complain when I come to terms with being fragile. I celebrate my victories with them, and if something happens to me I want them at my funeral (not grim, just prepared).

Understand my new reality

Fortunately, I am much more preoccupied with restoring my health and wealth than I am in dying. This is largely due to my squad. They are inspiring and help me expand my healing toolbox.

A colleague and friend who recently suffered a traumatic brain injury speaks to me about resilience and the importance of our new health realities. She encourages me to be patient with all of the goals I’ve put on hold and be ready to achieve new ones. She reminds me that I never know what’s going to happen and that the result may be better than I expect.

A dear uncle reminds me that worrying about all the terrible things that could happen is not very useful and assures me that I am being watched by a good care team. He sends me inspiring stories and cute emojis when I’m feeling bad. A close cousin helped me research possible causes and treatments for HES. And my father keeps advising: “Concentrate on what you can control.”

Eryn's cousin Nicole Scott helped her research the causes and possible treatments for hypereosinophilic syndrome.

He is a man of faith. In an uplifting tone, every time I need to hear it most urgently, he manages to tense up, telling me to choose my attitude and do something, anything that makes me happy.

It’s good dad advice. I realized that since I was diagnosed, I’ve been so focused on defeating this thing – seeing the right doctors, taking all the pills, and eating the right food that “cures” me – that my happiness was secondary.

Moving the goalposts

After studying HES for almost a year, I realize that healing has different levels. Sometimes it gets fixed and healed, and sometimes I just have to learn how to deal with things so I don’t injure myself or die.

Because of this, I made the decision to shift my goals from going back to the old state to investing in a new, stronger normal. And I no longer follow a healthy lifestyle just to avoid tragedy (because obviously I can’t), but to survive it and still live well. I will keep praying, working with my care team, and relying on my friends and family to support them.

But I also accept that there are questions that may never be answered and that my team and I are likely to get some wrong. I expect to cry from time to time and feel a lot of emotions that are not normal for me. But I will accept how I feel and not beat myself up for not doing it.

I also prioritize my happiness and diversify my joy. I’ve worked on passion projects (like writing this essay) running, lifting weights, and drawing. And I celebrate when things go well – when I feel good, when I have normal eosinophil levels, and when I manage to talk about my health without crying.

This is my blueprint, and so I’m cautiously optimistic about 2022. It will mark the start of the third year of the pandemic and the tenth anniversary of Martin’s death. Assess pain and progress. There can be more questions than answers. There will likely be setbacks and unexpected and undesirable changes.

But I am strangely encouraged by the trauma we have survived together over the past few years and how we can grow stronger from our collective and individual experiences.

As I move into 2022, I will be reminded of the work of George Bonanno, Professor of Clinical Psychology at Columbia University and author of The End of Trauma: How the New Science of Resilience is Changing How We Think of PTSD. He says that many people experience severe trauma during their lifetime but get through it and move on. He says most of us are resilient that way.

And knowing only that is part of healing.

Eryn Mathewson is a podcast producer on the CNN Audio team, formerly with ESPN and WNYC. She began her journalistic career at KPFA Radio in Berkeley, California, received a Masters degree in Journalism from Columbia University and grew up in New Mexico.

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Cleveland Clinic launches largest ever clinical study of neurological disorders | Health

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Updated: Wednesday 19 January 2022 10:03 am

The Cleveland Clinic has launched the largest clinical study to date to better understand why millions of people – about one in six people – around the world suffer from neurological diseases, including Alzheimer’s, Parkinson’s, multiple sclerosis, stroke or epilepsy.

The clinic on Wednesday announced the multi-year longitudinal study, which will collect data from 200,000 neurologically healthy individuals over a 20-year period to identify biomarkers of brain disease and targets to prevent and cure neurological disorders.

“What we’re suggesting here is … there should be some changes – in the blood, in the stool, in the brain, in our ability to think, walk, speak – that could give us if we follow.” [these] different factors over time so we may be able to identify something that will change,” said Dr. Imad Najm, principal investigator of the study and director of the clinic’s epilepsy center. “This will give us the opportunity to use it for pre-disease diagnosis and hopefully to develop new treatment approaches to stop the disease before it occurs.”

Researchers hope to uncover the causes of neurological disorders and figure out what’s happening before the symptoms become apparent — a time known as the “silent phase,” said Dr. Andre Machado, one of the leaders of the study, in a press release.

“Our hope is to change the course of neurodegeneration with the long-term goal of curing diseases in their earliest stages, years before symptoms even appear,” Machado said.

The study, which is funded in part by philanthropic contributions of all magnitudes, started at the hospital’s main Cleveland campus but will expand to other Cleveland Clinic locations over time, according to the press release.

During the first five years of the study, researchers will enroll and thoroughly screen 10,000 volunteers, the press release said. This group includes adults 50 years and older with no known neurological disorder and neurologically healthy adults 20 years and older who have a first-degree relative with multiple sclerosis.

The likelihood of someone developing a neurological condition increases over time, Najm said. Those aged 50 to 55 have a 1 percent chance of developing one, while the risk increases to 14 percent after age 75.

Because of this, researchers believe some of the older participants could develop brain disease within the first five years of the study, and investigators could begin exploring treatments and possible cures in the years that follow, Najm added.

“We think that in the first five years we’re going to have … some results that will hopefully provide a goal or two that we can build on,” he said, “to stop the disease after we understand the risk factor and the cause of it.” have identified disease. We don’t believe we will cure all diseases in five years, but we do believe that we will hopefully contribute to a better understanding of the silent phase before these debilitating disorders emerge.”

You do not have to be a current patient at the Cleveland Clinic to participate in the study. If a participant is diagnosed with a brain disorder at any point during the study, they will either be referred to their primary care physician for treatment or may elect to receive treatment at the Cleveland Clinic, Najm said.

Participants will be evaluated annually and undergo a neurological exam, blood tests, eye retina scans, brain MRIs, EEG and sleep studies, and other cognitive function tests, the clinic said.

The researchers will collect data points from these assessments to look for trend lines that capture genetic risk factors and unseen molecular, structural, neurophysiological and cognitive changes in the brain over time, according to the press release. These “disease fingerprints” can help researchers guide diagnostic and preventative medicine.

According to the press release, modern medicine has learned to deal with some symptoms of brain diseases. However, doctors continue to struggle with predicting who will become ill and how to stop—let alone cure—the progression of these diseases once they are diagnosed.

The study’s leaders hope their research will change that.

“This research will help to understand the mechanisms of brain diseases and lead to the development of preventive treatments for neurological diseases. This is precision medicine at its best,” said Najm. “We’re building a base to screen one person at a time — perhaps with something as routine as a blood test — to immediately diagnose a brain disorder and prevent it from occurring outright.”

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Overcoming Patient Barriers to Chronic Disease Management

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All too often, patients with chronic illnesses feel like a burden to their clinicians or caregivers.

Chronic illnesses don’t make days off—they’re called “chronic” for a reason. Since most patients (and physicians too) are unable to spend all day in an exam room, a large part of day-to-day disease management falls to the patient himself. This heavy responsibility can significantly affect a person’s mental health.

The challenges of disease self-care

To put the challenges of self-management in perspective, this section focuses on a chronic disease that affects 422 million people worldwide and causes 1.5 million deaths annually: diabetes.

Outside the doctor’s office, around-the-clock diabetes care is the patient’s responsibility. Patients must watch what they eat, monitor their blood sugar levels, take their medications, maintain a routine of moderate exercise, and some must self-administer insulin injections multiple times a day. They also need to know what to do in the event of a health emergency, such as: B. a sudden rise or fall in blood sugar levels that can cause dizziness, loss of consciousness, vomiting and other symptoms that can range from bothersome to life-threatening. And the more complex their diabetes is, the more difficult patient adherence becomes.

If they manage their condition well, people with diabetes can lead relatively normal lives. However, everyone has their own unique set of circumstances that are influenced by their underlying physical health, personal history, geographic location, and economic stability—the list goes on. However, there are some issues that are proving to be persistent obstacles to effective diabetes management:

Lack of education and understanding of the condition

To truly understand how to self-manage, patients with complex diabetes and their families or caregivers need educational support about the effects of disease on the body and how medication, exercise, and lifestyle adjustments can counteract these effects. And since most people rely on GPs for their primary health care, they may be missing important, disease-specific training.

Intrinsic barriers to adherence

A patient’s socioeconomic status, age, cultural beliefs, and other health factors can inform how they perceive self-management advice—or make it difficult to access help. Underlying psychological factors such as anxiety, depression, and eating disorders can also exacerbate these problems or act as additional barriers to compliance.

Frustration with the complexity of treatment

When patients find their treatment difficult or complicated, they are less likely to adhere to their recommended self-management. Physicians must ensure that patients do not experience any adverse effects – both physical and psychological – related to taking medication or treatments at home. It is also important for clinicians to understand if patients experience uncomfortable feelings related to medication, such as: B. Fear of injections or difficulty swallowing pills.

Difficulty affording treatment

In countries without universal health coverage, studies have found that out-of-pocket expenses are an important determinant of how likely patients are to adhere to their treatment. Patients with lower incomes are more likely to face economic barriers when it comes to consistently taking their prescribed medications. Patients cannot be expected to overcome their own economic barriers and many GPs are ill-equipped to provide patients with access to more affordable treatment.

If these barriers to successful adherence are not addressed, they can result in patient deterioration, reduced quality of life, development of additional health problems, long-term or re-hospitalization, or death.

Despite these multifaceted challenges, there are steps clinicians and patients can take to improve patient access and experience to disease management.

How to improve care systems for patients

When patients understand and feel involved in their own treatment plans, they are much more likely to adhere to clinical recommendations.

The patient’s relationship with their healthcare provider is one of the most important interactions in healthcare, but it’s only part of a larger support system. Augmenting the patient’s care team with a variety of support specialists—such as health coaches, counselors, care coordinators, and disease educators—can help patients adhere to treatment plans and achieve better health outcomes.

These methods of patient support can greatly improve self-management between doctor visits, making appointments more efficient and productive.

  • Use additional support programs
  • Approach communication from a patient-centric perspective
  • Provide multiple communication touchpoints

How to help patients overcome adherence barriers

While it may feel contradictory to a clinician, the key to overcoming patient non-compliance is this: Healthcare professionals must position the patient as the primary decision-maker in their own care and actively support the patient’s efforts to meet their care goals.

Doctors can embody this approach by asking the patient questions such as:

“What would you like to take away from today’s visit?”

“What is most important to you?”

“How can I help you achieve your goals?”

“What do you find difficult?”

“What confuses, troubles or scares you?”

“Need help identifying less complicated treatment options?”

“Need help finding cheaper treatment options?”

Integrating activities such as goal setting and problem solving into routine appointments will help facilitate patient-physician communication beyond mere status updates. Additionally, connecting patients with health coaches gives them the opportunity to easily ask questions and share self-management updates between appointments.

Alicia Warnock, MD, is Chief Operating Officer of Stability Health, a diabetes management company.

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Mental disorders remain significant global burden on health

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January 18, 2022

2 minutes read

Source/Disclosures

Disclosure:
Ferrari does not report any relevant financial disclosures. All other relevant financial information can be found in the study.

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According to a 30-year global systematic analysis published in The Lancet Psychiatry, the prevalence of mental disorders has increased and remains a leading contributor to the global burden of disease.

“Mental disorders are increasingly recognized as a major contributor to the burden of disease. In order to meet the mental health needs of individual countries in a way that prioritizes health systems transformation, an in-depth understanding of the magnitude of the impact of these disorders, including their distribution in the population, the health burden imposed and their wider health outcomes, is essential “, Alize Ferrari, PhD, from the Queensland Center for Mental Health Research at the University of Queensland and colleagues.

Infographic data derived from: Ferrari A, et al. Lancet Psychiatry. 2022;doi/10.1016/S2215-0366(22)00002-5.

Ferrari and colleagues attempted to measure the impact and incidence of 12 mental disorders between 1990 and 2019 at global, regional, and national levels using multiple quality of life metrics: disability-adjusted life years (DALYs), years lived with disability (YLDs), and years of life lost (YLLs).

Researchers evaluated estimates of prevalence and burden in males and females in 23 different age groups in 204 countries and territories worldwide. They estimated DALYs as the sum of YLDs and YLLs up to premature mortality. In addition, they included information analyzed from multiple databases for prevalence, incidence, remission, duration, severity, and excess mortality for individual mental disorders. They performed Bayesian meta-regression analysis to estimate frequency by disorder, age, sex, year, and location.

The results showed that mental disorders accounted for an estimated 654.8 million cases in 1990 and 970.1 million cases in 2019, an increase of 48.1 percent. Australasia, tropical Latin America, and high-income North America had the highest prevalence of mental disorders across all measurements.

The prevalence of depressive disorders was high in sub-Saharan Africa, North Africa and the Middle East, as well as in Australasia, tropical Latin America, and high-income North America. The frequency of bipolar disorder and schizophrenia varied to a lesser extent in all regions.

Depressive disorders ranked highest among all age groups in the study except those from birth to age 14, for whom behavioral problems were the main cause of distress.

A sharp increase in the global number of DALYs due to mental disorders over the course of the study was noted, from 80.8 million in 1990 to 125.3 million in 2019, and an increase in the percentage of resulting DALYs to 3.1% in 1990 and 4.9% in 2019.

The highest DALY rates were observed in the US, Australia, New Zealand, Brazil, Western Europe, Sub-Saharan Africa, North Africa and the Middle East. The lowest DALY rates were observed in Southeast Asia, East Asia, high-income Asia-Pacific and Central Asia.

Women and girls were found to carry a greater burden of depressive disorders, anxiety disorders and eating disorders than men and boys, while the opposite was true for autism spectrum disorders and ADHD. At the end of the study, 80.6% of the burden of mental disorders was in those of working age (16 to 65 years), with 9.2% of the remaining burden being in those under 16 years of age.

“The GBD 2019 results underscore the large proportion of the global burden of disease attributable to mental disorders and the global disparities in this burden,” Ferrari and colleagues wrote. Furthermore, there has been no evidence of a global reduction in exposure since 1990, despite evidence-based interventions that can reduce exposure across age, gender, and geographic locations.”

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