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Chronic Disease, Medicine and Society, Mental Health

Boldly Me: Bay Area non-profit helps build self esteem in those who feel different

Alanna headshot

Alanna Powell

Boldly Me is the dream-come-true of founder Alanna Powell, who was diagnosed with Alopecia Universalis as a toddler and consequently spent the majority of her life completely bald. Powell has built upon her own experience with shaky self-confidence and self-doubt to support and inspire those who “feel different.”

I recently had the chance to talk with Powell, who founded the Fremont, CA-based organization in 2009. Boldly Me programming, which aims to improve the psychological health and self-esteem of both kids and adults, takes place around the Bay Area: The Fremont Unified School District has widely adopted it, and Powell reports that Stanford physician Joyce Teng, PhD, MD, is advocating for it to reach Palo Alto schools.

Boldly Me offers a variety of classes and assembly presentations teaching self-compassion and communication, starting with one called “Me and my thoughts.” Programming also includes activities like hula dancing, baton twirling, and arts and crafts, and community events showcase the kids’ talents and celebrate individuality. The company bases its approach on cognitive and dialectical behavioral therapy, and it has volunteer psychologists and doctors on its advisory board.

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Kids dance hula at a Boldly Me event

While the core of the program is creating personal compassion and self esteem to enable internal resistance to external reactions, it also approaches the problem from the outside by educating peers and parents. However, Powell says that programming directed at parents is often met with defensiveness, so Boldly Me starts with the kids by teaching them how to communicate problems to parents. Once the parents receive this information, they are receptive to suggestions.

Powell’s personal story was initially a big part of the programming; participants found it inspiring. When I spoke with her, she shared how her parents, with the best of intentions, were overprotective and encouraged her to always wear a wig in company. Her self-consciousness limited her in school, and as a young woman she was afraid to get married and have kids because she worried that a bald woman was unlovable. Her now-husband inspired her by saying that if she was afraid of her wig falling off, she should just “go bald!” She began to do things she never thought she would, such as river rafting and roller coasters. But the process of self-confidence is gradual – she wore her wig during labor, nervous to meet her new baby. Now her kids – ages 13, 11, and 9 – talk about their “cool bald mom!”

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CDC, Chronic Disease, Health Policy, In the News, Infectious Disease, Public Health

To screen or not to screen for hepatitis C

Hep CIn the past few years, newer, more effective treatments have been introduced for hepatitis C – a disease that can lead to chronic liver problems and in the worst cases, liver cancer. In 2012, the Centers for Disease Control and Prevention recommended screening for the disease in anyone born between 1945-1965, since about three-quarters of cases occur in this age group, the Baby Boomers. Last year, the World Health Organization also called for more screening for the disease.

But in a recent analysis piece in The BMJ (formerly the British Medical Journal), several scientists, including Stanford epidemiologist John Ioannidis, MD, DSc, lay out the case that universal screening in this age group may not be warranted. A story in the San Francisco Chronicle today quotes Ioannidis:

“The question is whether these aggressive screening policies are justified and whether they would result in more benefit than harm,” said Dr. John Ioannidis...“We know very little about the potential harms of these drugs, especially in the long-term. And we don’t know how they will translate into long-term benefits.”

Ioannidis and his colleagues suggest that instead of rolling out widespread screening programs, researchers, as soon as possible, start a randomized trial to test the usefulness of screening and who may benefit from it.

On top of the medical uncertainties of the new treatments, they’re expensive, costing about $84,000 for the 12-week treatment. But they’ve been shown to cure patients of their hepatitis C infections at the end of that 12 week stint. Not all people who contract the disease will develop chronic infections, but a majority – two-thirds -will. Twenty percent of those cases will go on to develop severe liver disease.

Advocates of universal screening say that the new screening strategy could identify many people who don’t know they’re sick – symptoms from hepatitis C chronic infections can take years to manifest. But Ioannidis and his colleagues note that many people will get unnecessary treatment and that the long-term uncertainties of the treatment should be taken into consideration.

Previously: Despite steep price tag, use of hepatitis C drug among prisoners could save money overallA primer on hepatitis CFor patients with advanced hepatitis C, benefits of new drugs outweigh costsDrugs offer new hope for hepatitis C and Program examines hepatitis C, the “silent epidemic”
Photo of hepatitis C virus by AJ Cann

Chronic Disease, Mental Health

The art of healing

The art of healing

painting a heart

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from a patient advocate from Syracuse, New York.

“There’s no cure or additional treatment as all viable options are exhausted. This is your new normal.”

My gastroenterologist was stating the obvious, yet I stared at him with incredulity. I’d had my second pancreatectomy a year prior, and it failed to control my critical and idiopathic hypoglycemia and pain. I was now receiving my nutrition via IV since repeated surgeries had reduced my ability to digest and absorb food, creating erratic swings in blood sugar necessitating constant monitoring. I was stunned that this was how things would be from now on.

I cried after that appointment as images of my life prior to getting sick flashed before my eyes. Until three years earlier, I had been working as a registered dietitian and diabetic educator, I cared for two busy teens, and I lived a life rife with joyful spontaneity. After a few week of impenetrable sadness I raged at God for condemning me to this life of constant pain and uncertainty. Why me? How could I be so sick when I lived such a healthy and active lifestyle? I knew I needed help to cope with this transition. Chronic illness was a dark and unfamiliar place. At 50, my life as I knew it was over.

I had always been a bibliophile, and I used audio books when I was too ill to read. Music was inspiring and while I had countless songs on my iPod it didn’t fill my days. My counselor gently encouraged me to try something new, so I decided to visit my local art store and see if there was anything of interest. I’d taken classes over the years but didn’t consider myself an artist, so I walked through the door with trepidation. But I was immediately welcomed by a knowledgeable artist who took me in hand. We walked down the aisles and she spoke with ardent enthusiasm about the different mediums available to me. When I saw the rainbow of acrylic paints I made my decision: I was going to paint.

Immediately following my purchase, I had buyer’s remorse. What did I know about painting? I had been encouraged to pursue excellence, and this was akin to jumping off the proverbial cliff. It took two weeks before I prepared my first canvas and put brush to paper. And what transpired next surprised me.

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Aging, Chronic Disease, Ethics, Health Policy

Exploring the value of longevity with bioethicist Ezekiel Emanuel

baby hand in old hand - big

In a popular article in the Atlantic published this past fall, Ezekiel Emanuel, MD, bioethicist and prominent federal policy adviser, made a controversial case against longevity. Just before the recent holidays, the USC Annenberg School for Communication & Journalism sponsored a webinar during which Emanuel explained and elaborated on his message. It’s not that he “hopes to die at 75,” as the title chosen by the Atlantic suggested, but he wants a life at 75 focused on living, not on living longer.

Emanuel essentially argues for quality of life over quantity of years, and he claims that American society is becoming obsessed by the latter. I listened in on his December talk, which began with an ad from the AARP that glorifies “going on forever” – a value he says is reflected in both the medical system and our contemporary culture.

He directed his scientific criticism against the idea of the “compression of morbidity” – the belief that with enough medical advances, disabilities will go away and people will live in good health until, more or less suddenly, they die. He calls this the “rectangularization” of life: falling off a cliff instead of rolling down a gradual decline. The idea is immensely popular and money-making, but while some research claims to prove it, far more proves the opposite. There is, in fact, an expansion of morbidity as people live longer, an elongated and more gradual decline with more disabilities and less and less creativity.

Given this, Emanuel’s hope and recommendation is two-fold: that people will consider what makes their life meaningful and spend their energy cultivating that, and that medical resources will be redirected from prolonging life to improving its quality at the outset – by reducing the country’s exceptionally high rate of premature births, for example.

American life expectancy is at an all-time high at nearly 80 years, but are octogenarians living meaningfully? Last month in the New York Times, David Brooks argued against Emanuel’s earlier piece by saying that the “happiest people” are ages 82-85; in the webinar, Emanuel says this misses the point. It’s much easier to measure happiness than meaningfulness, yet the latter is the real aim of life (and, furthermore, Brooks didn’t account for the perspectives of those in nursing homes, assisted living, or suffering from dementia). Emanuel talked of patients who say cancer was “the best thing that happened to me” because it made them focus on what was meaningful in their life. The end of life is important to think about, as it helps us see what we want from life now.

“Contorting life around living as long as possible seems to me to be counter-productive,” he said. “What we should be focusing our life on is what’s meaningful, how we enrich other people and contribute to our families and society.”

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Chronic Disease, Nutrition, Obesity, Videos

The role of nutrition in diabetes prevention and management

The role of nutrition in diabetes prevention and management

Can certain diets help patients prevent or manage their diabetes? Which foods are best for diabetics and which ones should they avoid? If you increase your coffee consumption, will it reduce your risk of diabetes? Kathleen Kenny, MD, a clinical associate professor at Stanford, and Jessica Shipley, a clinical dietitian at Stanford Hospital & Clinics, answered these questions and others about diabetes and nutrition in a recent Stanford Health Library talk.

In the above video, Kenny and Shipley also discuss the glycemic index and how it should be used to tailor dietary choices; examine how Mediterranean, low-carb and low-calorie diets affect diabetes; and explain how eating healthy can prevent or reverse the disease. The lecture is a must-watch for anyone wanting to make healthier food choices to benefit their health.

This video is the final lecture in a three-part series addressing important questions related to diabetes and lifestyle choices.

Previously: Diabetes and nutrition: Healthy holiday eating tips, red meat and disease risk, and going vegetarian, Diabetes and nutrition: Why healthy eating is a key component of prevention and management, Diabetes self-management program helps at-risk teens and their families make healthier choices and New evidence for a direct sugar-to-diabetes link, Examining how diet soft drinks impact your health

Chronic Disease, Health and Fitness, Videos

The importance of regular exercise in delaying and treating diabetes

The importance of regular exercise in delaying and treating diabetes

Looking for motivation to exercise regularly? Consider this statistic: People who engage in physical activity for seven hours a week have a 40 percent lower risk of dying early than those who are active for 30 minutes or less a week. Among the many health benefits bestowed is helping prevent and manage diabetes.

In this Stanford Health Care video, Baldeep Singh, MD, a clinical professor at Stanford who focuses on chronic disease management, explains how exercise can lower blood sugar during your workout and afterwards and help insulin work better. He says in the talk:

[Exercise] is one of the most important things that you can do as you get older because it really has all plus and no minuses … One of the keys is consistency. You want to be consistent in your regiment – even the same time of day … It’s much better to make small incremental changes and be consistent with them, than to make a huge change and than do nothing the rest of the year.

This video is the second lecture in a three-part series addressing important questions related to diabetes and lifestyle choices.

Previously: Examining the role of exercise in managing and preventing diabetesWithout exercise, Americans are growing more obese, according to Stanford researchers, Preventing pre-diabetes from turning into diabetes and Fighting a fatalistic attitude toward diabetes 

Aging, Chronic Disease, Dermatology, Stanford News

Patching up diabetic ulcers

Patching up diabetic ulcers

Like the more than 29 million people in the U.S, my mother has diabetes. Her eldest sister and my maternal grandmother both died of complications of the disease, and her one surviving sister is coping with complications that will probably claim her life in a few years. I’ve got gestational diabetes (a temporary version of the disease that occurs during pregnancy), and due to that and my family history I’m likely to develop type-2 diabetes down the line, also. So I’m always very interested in hearing about research advances related to the disease.

One such advance: As reported today in the the Proceedings of the National Academy of Sciences, Stanford researchers have developed a new skin patch that delivers a drug to aid the healing of diabetic ulcers. Diabetic ulcers (or open wounds) are one of the most common complications of the disease, with an estimated 15 percent of diabetics developing them. They often occur on the feet and are the leading cause of diabetes-related amputations. The high level of blood sugar in diabetics’ blood impairs the body’s ability to grow new blood vessels, which slows down healing of the ulcers.

Deferoxamine, or DFO, is an FDA-approved drug that can help correct this problem, but it would be toxic if taken for as long as diabetics need it to heal their ulcers. So Stanford researchers developed a local application via a skin patch. In a press release, study authors Dominik Duscher, MD, a plastic and reconstructive surgery postdoctoral fellow, and surgeon Geoffrey Gurtner, MD, talked about the findings of their work in animal models:

Not only did the wounds in the mice heal more quickly, Duscher said, but the quality of the new skin was even better than the original. The researchers also used the DFO matrix on a mouse with diabetes to see if it would prevent ulcer formation — and it did. “We were very excited by the results,” Duscher said, “and we hope to start clinical trials soon to test this in humans.”

“This same technology is also effective in preventing pressure ulcers, which are a major source of morbidity and mortality in patients with neurologic injury or the elderly,” said Gurtner, who is also the Johnson & Johnson Distinguished Professor in Surgery II. “The actor Christopher Reeve actually died from a pressure ulcer and not his spinal cord injury, which really emphasizes the extremely limited therapeutic options for these patients.”

Luckily my mother hasn’t had to deal with diabetic ulcers, though when she gets small cuts or chaps on her skin, they do take forever to heal, so she’s super-vigilant about avoiding them. The possibility of preventing more serious ulcers with this patch is a development I’ll be following closely.

Previously: A primer on preventing or delaying type 2 diabetes and New medicine? A look at advances in wound healing

Chronic Disease, Health and Fitness, Nutrition

How to make it through holiday dinners without putting on the pounds

How to make it through holiday dinners without putting on the pounds

640px-Christmas_sugar_cookies,_January_2010A lot of people are worrying about overeating over the holidays, especially if they’re on a diet. We’ve offered advice in the past on how to avoid gaining weight over the holidays, and the  blog Obesity Panacea yesterday listed a few tips for eating healthy. My favorite:

Serve healthy snacks in large bowls and the unhealthy ones in small bowls

This little trick should result in a greater consumption of healthy snacks and a limited consumption of unhealthy ones, not only helping you, but those you have over to your place during the holidays.

A wonderfully simple study found that when snacks are offered in a large bowl, people take 53% more food (146 extra calories) and eat 56% (142 calories) more than when offered the same amount of food but in a smaller bowl (roughly half the size of large bowl).

It’s an easy change to make, but not one I never would have thought about. Other tips include drinking a glass or two of water 30 minutes before a meal and making sure you eat breakfast. Both tips ensure you won’t overeat when you get to the Christmas dinner table.

Previously: “Less is more”: More holiday eating tips from a Stanford nutrition lecturerEasy-to-follow tips to avoid overeating this holiday, “Less is more”: Eating wisely, with delight, during the holidays and Enjoying the turkey while watching your waistline
Photo by sweetfixNYC

Chronic Disease, Genetics, Pediatrics, Stanford News

Stem cells implicated in Duchenne muscular dystrophy

Stem cells implicated in Duchenne muscular dystrophy

640px-Duchenne-muscular-dystrophyStanford researchers published a paper today in Science Translational Medicine describing how stem cells are involved in the development of Duchenne muscular dystrophy, a disease that results in progressive, often severe muscle weakness. It affects about one in every 3,600 boys born in the U.S.

The research team determined that the stem cells surrounding muscle tissue gradually became less able to create new muscle cells and instead begin to express genes that lead to connective tissue formation. Excess connective tissue accumulation, which is called fibrosis, occurs in many diseases. Thomas Rando, MD, PhD, a Stanford neurologist and one of the authors of the paper said in a release about the new study:

These cells are losing their ability to produce muscle, and are beginning to look more like fibroblasts, which secrete connective tissue. It’s possible that if we could prevent this transition in the muscle stem cells, we could slow or ameliorate the fibrosis seen in muscular dystrophy in humans.

The researchers also found that a drug already approved to treat high blood pressure in humans called losartin can slow these changes in stem cells in laboratory mice, although much more work is needed to find out if it could be helpful in children with Duchenne.

The researchers are focusing on how to get the drug to target only muscle cells, but they’re also interested in how they can apply their findings to other diseases. Rando, who directs the Glenn Center for the Biology of Aging at Stanford, also commented:

Fibrosis seems to occur in a vicious cycle. As the muscle stem cells become less able to regenerate new muscle, the tissue is less able to repair itself after damage. This leads to fibrosis, which then further impairs muscle formation. Understanding the biological basis of fibrosis could have a profound effect on many other diseases.

Previously: Working on a gene therapy for muscular dystrophy, New mouse model of muscular dystrophy provides clues to cardiac  failure, and Mouse model of muscular dystrophy points finger at stem cells
Photo of muscle cells affected by Duchenne disease by Edwin P. Ewing

Chronic Disease, Stanford News, Videos

A primer on preventing or delaying type 2 diabetes

A primer on preventing or delaying type 2 diabetes

Diabetes affects an estimated 29 million Americans, and one in four people don’t know they have the disease, according to the latest data from the Centers for Disease Control and Prevention.

Stanford Health Library recently held a three-part lecture series about preventing or delaying the onset of type 2 diabetes. A the first event, Stanford primary care doctor Bryant Lin, MD, shared with the audience that diabetes is “a topic near and dear to his heart” and that he deals with the disease “in both his personal life and clinical life.” Lin’s family medical history puts him at high risk for the disease: His mother, her six siblings and his maternal grandparents were all diagnosed with diabetes. On the clinical side, he treats diabetic patients at Stanford Health Care.

In the above video, Lin provides an overview of the epidemiology, pathophysiology, risk-assessment and diagnosis of diabetes.

This video is the first lecture in a three-part series addressing important questions related to diabetes and lifestyle choices.

Previously: Diabetes and nutrition: Healthy holiday eating tips, red meat and disease risk, and going vegetarian, Diabetes and nutrition: Why healthy eating is a key component of prevention and management and Examining the role of exercise in managing and preventing diabetes

Stanford Medicine Resources: