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Chronic Disease

Chronic Disease, Events, Medicine X, Sexual Health

A discussion of intimacy and illness at Medicine X: “Embrace yourself and embrace your normal”

A discussion of intimacy and illness at Medicine X: "Embrace yourself and embrace your normal"

21735972186_ef347da42d_zMedicine X is well known for shining a light on dark feelings and difficult-to-talk about topics, as well as being a safe place to hold such conversations within the health-care community. Last year, a key theme of the conference was addressing the relationship of mental and physical health. The discussion of treating the whole person, not just their disease or symptoms, was expanded this year to include sexual health.

In a Sunday session exploring intimacy and illness, Medicine X executive board member and well-known patient advocate Sarah Kucharski bravely spoke about her own relationship experiences as she led the discussion. “Illness completely changes one’s relationship with one’s body. It’s the idea of feeling broken. Of feeling you’re a burden. Of feeling not sexy,” she said.

Diagnosed at the age of 31 with intimal fibromuscular dysplasia, Kucharski has undergone multiple surgeries, resulting in permanent scarring of her body. She shared with the audience her anxiety over romantic partners seeing the scars for the first time during intimate moments and suddenly having to answer their questions. She said, “To expose that visual reminder of my health, maybe it’s too much. Maybe it’s forcing me to be who I really am instead of enjoying a certain escapism,” she said. “It takes away my opportunity to talk about my health.”

Many patients and caregivers can relate to Kucharski’s struggle with intimacy and illness. She conducted an informal online survey in preparation for the conversation. The biggest finding? There is no normal. But this reality often isn’t conveyed in doctor-patient conversations. For patients who undergo a medical procedure or women who give childbirth, physician advice is usually to wait for a certain period of time until they are physically healed and then resume sexual activity “when they feel ready.”

Matthew Dudley, MD, a hospitalist who works in Alaska, said one of the factors driving the lack of doctor-patient communication about sexual health is that “health care in this country is reactionary.” He added, “We end up dealing with this emergent actions, and so you don’t get time to sit down and talk about these issues.”

In addition, pointed out panelist Alexandra Drane, the medical education curriculum at many institutions doesn’t dedicate enough time to sexual health issues. Beyond expanding the training of future doctors, she advocated for “normalizing the conversation” about intimacy. “This is a topic that most people really, really want to talk about. There needs to be training [for doctors] on how to have these conversations and how to make someone feel safe and normal,” said Drane, co-founder of the Eliza Corporation.

But more training for medical students may not to be the silver bullet that resolves the problem, say some panelists. Dudely said he received a full two weeks of training on sexual health issues during medical school. “I thought at my school we did a good job,” he said, “But in the day to day it gets lost. We need patients to go to their doctors and say, ‘I want to know more about this.’ As our culture becomes more open about these issues, I think it will come to the forefront.”

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Addiction, Anesthesiology, Chronic Disease, Pain, Stanford News, Videos

“People are looking for better answers”: A conversation about chronic pain

"People are looking for better answers": A conversation about chronic pain

2048px-Low_back_painChronic pain limits the lives of an estimated 100 million people in one way or another and costs our country half a trillion dollars per year, according to Sean Mackey, MD, PhD, chief of the Division of Pain Medicine. To address the needs of the many people suffering from back pain, the most common kind of chronic pain, Mackey and other doctors and researchers in the division recently held a free Back Pain Education Day.

The event was popular enough that all seats were filled more than a week ahead of time, and a video stream of the day’s speakers was viewed by almost 1,500 people during the conference and in the week following. Recordings of the day’s talks can now be viewed on the Division of Pain’s YouTube channel.

We don’t have a cure for chronic pain. What we have are exceptional ways [to help] people get back their lives

During a recent conversation, Mackey told me the big turn-out reflects the keen interest people living with back pain have in finding solutions. “People are looking for better answers: why they have what they have and what they can do about it,” he said. “We wanted to provide them with real-world tools that they can use to control their pain.”

Speakers at the event covered varied ground, including physical therapy approaches to pain management, new research in using acupuncture to treat pain, self-management strategies, mindfulness-based pain reduction and the important role of sleep in pain. (Recent research has shown that poor sleep can intensify and prolong pain.) One over-riding theme was the role of the brain, Mackey said, not just in terms how people experience pain, but also how it can help turn down or turn up pain.

Mackey cautions that a quick fix often isn’t possible, so people living with chronic pain need to think about long-term management. “It’s a chronic disease, like diabetes. We don’t have cures for diabetes, and we don’t have a cure for chronic pain,” he said. “What we have are exceptional ways to control the disease and ways [to help] people get back their lives.” Speaker Beth Darnall, PhD, the event co-chair, emphasized that pain psychology techniques can empower people to lessen distress and pain, and begin moving toward meaningful life goals.

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Cardiovascular Medicine, Chronic Disease, Science, Stanford News, Stem Cells

Patching broken hearts: Stanford researchers regrow lost cells

Patching broken hearts: Stanford researchers regrow lost cells

Design 1_2Most heart attack survivors face a long and progressive course of heart failure due to damage done to the heart muscle. Now, in a study published in the journal Nature, researchers are reporting a method of delivering a missing protein to the lining of the damaged heart that regenerates heart muscle cells — cardiomyocytes — killed off during a heart attack.

The study, which was conducted in animal models, offers hope for future treatments in humans, according to the senior author of the study. “This finding opens the door to a completely revolutionary treatment,” Pilar Ruiz-Lozano, PhD, told me. “There is currently no effective [way] to reverse the scarring in the heart after heart attacks.”

The delivery system that researchers used in this study is a biodesigned tissue-like patch that gets stitched directly onto the damaged portion of the heart. The protein Fstl1 is mixed into the ingredients of the patch, and the patch, made of an acellular collagen, eventually gets absorbed into the heart leaving the protein behind. Our press release explains how the patch came to be:

The researchers discovered that a particular protein, Fstl1, plays a key role in regenerating cardiomyocytes. The protein is normally found in the epicardium — the outermost layer of cells surrounding the heart — but it disappears from there after a heart attack. They next asked what would happen if they were to add Fstl1 back to the heart. To do this, they sutured a collagen patch that mimicked the epicardium to the damaged muscle. When the patch was loaded with Fstl1, it caused new cardiomyocytes to regenerate in the damaged tissue.

In reading over the study, I was particularly interested in what an engineered tissue-like patch applied to a living heart looked like – and how exactly the patch got made. I called one of the study’s first authors and went to see him in his lab.

Vahid Serpooshan, PhD, a postdoctoral scholar in cardiology at Stanford, told me he can make a patch in about 20 minutes. It’s a bit like making Jell-O, he said; collagen and other ingredients get mixed together then poured into a mold. Serpooshan uses molds of various sizes depending on what kind of a heart the patch will be surgically stitched onto.

“The damaged heart tissue has no mechanical integrity,” Serpooshan said. “Adding the patch is like fixing a tire… Once the patch is stitched onto the heart tissue, the cardiac cells start migrating to the patch. They just love the patch area…”

Previously: Stanford physician provides insight on use of aspirin to help keep heart attacks and cancer away, Collagen patch speeds healing after heart attacks in mice and Big data approach identifies new stent drug that could help prevent heart attacks
Image, of a patch stitched to the right side of the heart, by Vahid Serpooshan

Chronic Disease, Health and Fitness, In the News, Nutrition, Obesity, Stanford News

A conversation about the diabetes epidemic

A conversation about the diabetes epidemic

On this morning’s KQED’s morning radio show, Forum, several doctors including Stanford’s Bryant Lin, MD, discussed how diabetes is affecting the health of millions of people globally.

A recent study in the Journal of the American Medical Association estimated that about half of all adults have diabetes (diagnosed or undiagnosed) or pre-diabetes. Lin and his fellow panelists talked about how changes in our diet and lifestyle have fueled the number of diabetic cases, as well as how genetics can tip the odds against certain patients. Lin mentioned that Asians have a higher rate of diabetes than whites, for example.

Like Lin, I have a family history of diabetes. (Like Lin, I’ve also struggled to maintain my weight). That history has made me keenly interested in staying abreast of recent findings about diabetes – and I surprised to hear that among young people, high rates of liquor consumption is influencing diabetes rates. It’s not just soda intake that we have to watch out for.

Another surprising finding that Lin described was that for pre-diabetics, taking Metformin, a drug that helps control diabetes and blood sugar, can help stave off full-blown diabetes. Eventually, it may become routine to prescribe this medication in certain populations, but Lin said that guidelines haven’t caught up with this aspect of diabetes care.

Other factors at play, Lin noted, include the role of the microbiome in promoting or protecting people from diabetes. And people who undergo bariatric surgery for weight management often find their diabetes is cured, but doctors don’t understand exactly why that’s the case.

Despite the staggering number of people affected, it’s clear that we still don’t understand all the complex factors that influence this disease.

Previously: Faulty fat cells may help explain how Type 2 diabetes beginsThe role of nutrition in diabetes prevention and managementThe importance of regular exercise in delaying and treating diabetes and Examining the role of exercise in managing and preventing diabetes

Cardiovascular Medicine, Chronic Disease, Women's Health

Surviving a betrayal of the heart

Surviving a betrayal of the 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 with spontaneous coronary artery dissection (SCAD).

2259323415_ab113de5bc_zThis is a story about a betrayal of the heart — an actual heart. Girl has heart, girl treats heart well, heart gets torn up and girl figures out how to recover from this betrayal by her own body.

Last summer, I participated in my second sprint triathlon. The first part was a half-mile swim in a cold lake. I’d been swimming this distance for months and had done this same triathlon before. Yet, I couldn’t catch my breath, my chest hurt and swimming was appallingly hard for me. But I persevered and finished the biking and running events just fine.

Two weeks later, unnerved by my unsuccessful swim, I steeled myself for a similar swim across a lake in Idaho. Almost halfway through my swim, I started struggling to breathe and felt a band of pain and searing cold across my sternum. I felt weak and cold and couldn’t swim anymore.  Fortunately, my husband was on a paddleboard close by. I called him over, climbed on the board and hung onto his ankles for dear life (vomiting occasionally) as he paddled us to shore.

In retrospect, I had many of the typical symptoms women experience when having heart attack, but it took a while before it dawned on us that I was suffering from one. I don’t fit the profile: I was 53, nearly vegetarian, slim, fit with a mild addiction to kale smoothies. However, I had just gone through menopause and was on a low dose of HRT.

Fortunately, the ER doctor in Idaho did an EKG and figured out I was having a heart attack. The next day, an angiogram found a tear in the innermost wall of my coronary artery called a spontaneous coronary artery dissection (SCAD). This tear causes blood to flow between the layers of the arterial wall, blocking blood flow and causing a heart attack. SCADs are rare, yet, nearly 80-90 percent of SCAD patients are women in their early 40s with no additional risk factors.

It’s not yet known what causes SCADs. So, I am left with a lot of unanswered questions, and I’ve had to slowly rebuild trust in my own body and abilities, knowing my condition is rare and poorly understood.

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Autoimmune Disease, Chronic Disease, FDA, Immunology, Pediatrics, Research, Stanford News

Can a safe, cheap pill prevent type 1 diabetes?

Can a safe, cheap pill prevent type 1 diabetes?

happy pillType 1 diabetes, an autoimmune disorder once known as juvenile diabetes because it tends to strike during adolescence or earlier, affects one in every 300 people. With the diagnosis comes the certainty of a lifetime of insulin injections, made necessary due to the destruction of insulin-producing cells in the pancreas by a misguided immune system.

Insulin is a hormone that alerts the body to the presence of glucose in the blood, typically after a meal. In insulin’s absence, the body’s tissues fail to take up glucose, a key energy source. Without several-times-daily insulin shots, type 1 diabetes patients’ blood sugar levels can shoot up to dangerous heights – a condition called hyperglycemia.

There’s never been any way to prevent type 1 diabetes, although it can be predicted based on the detection of self-targeting antibodies in a blood test. But screening for type 1 diabetes this way hasn’t been particularly useful, because there’s been nothing to be done for patients diagnosed in the asymptomatic phase except wait for them to become hyperglycemic and put them on insulin.

Now, an elaborate mouse study by Stanford immunologist and structural biologist Paul Bollyky, MD, PhD, shows that it might be possible to intervene during the asymptomatic stage of type 1 diabetes – using a pharmaceutical compound that’s been on the global market for more than 40 years and has a terrific safety record – thereby stopping the immune system’s stupid but relentless destruction of the pancreas’s vital insulin-producing cells, and stave off hyperglycemia indefinitely.

Bollyky and his colleagues first showed that a particular substance, hyaluronan, builds up near insulin-producing cells in mice developing the murine equivalent of type 1 diabetes, confirming earlier findings in postmortem human pancreatic tissue that had been supplied to Bollyky’s team by the Juvenile Diabetes Research Foundation.

“We wondered what would happen if we prevented that buildup,” Bollyky told me when I interviewed him for my news release on the study. “And we knew a drug that does that.”

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Cardiovascular Medicine, Chronic Disease, Health and Fitness, NIH, Research, Stroke

NIH-funded study shows effectiveness of intensive blood pressure management

NIH-funded study shows effectiveness of intensive blood pressure management

blood pressure reading2This morning the National Institutes of Health announced that it halted a clinical trial on high blood pressure in order to share the results publicly right away. According to the initial study findings, managing high blood pressure so it falls below a specific blood pressure target significantly reduces rates of cardiovascular disease and lowers risk of mortality.

The Systolic Blood Pressure Intervention Trial, commonly called SPRINT, is the largest known study of its kind to examine how holding systolic blood pressure below the currently recommended level affects cardiovascular and kidney diseases.

For this trial, nearly 100 medical centers in the United States and Puerto Rico, including Stanford, recruited more than 9,300 participants age 50 and older for a study that involved carefully adjusting the amount or type of blood pressure medication to achieve a target systolic pressure of 120 millimeters of mercury (mm Hg).

As outlined in an NIH press release, the researchers found that reducing systolic pressure to 120 mm Hg or less, reduced rates of stroke, heart attacks, heart failure and other cardiovascular events by almost a third and reduced the risk of death by almost a quarter, compared to the target systolic pressure of 140 mm Hg.

“SPRINT addressed a fundamental question faced by internal medicine physicians, nephrologists, cardiologists and other specialists – that is, how low should our blood pressure target be?” said Glenn Chertow, MD, MPH, principal investigator for the Stanford site.

Although researchers have known for some time that lowering patients’ blood pressure can improve survival rates and reduce their chances of having a stroke, heart disease or a kidney-related event, studies that link these benefits to a specific blood pressure were lacking. This is why the SPRINT study is so important.

“Before today there was no evidence from randomized clinical trials to demonstrate that lowering systolic blood pressure toward or below 120 mmHg was safe and effective,” Chertow told me yesterday afternoon.

“Adoption of the approach learned from SPRINT could change medical practice and materially improve the public health,” Chertow continued. “We’re proud to have participated” in the study.

Previously: The importance of knowing your blood pressure level in preventing hypertensionUltra-thin flexible device offers non-invasive method of monitoring heart health, blood pressureAsk Stanford Med: Stanford interventional cardiologist taking questions on heart health and High-quality chocolate linked to lower risk of heart failure
Photo by World Bank Photo Collection

Chronic Disease, Events, Pain, Stanford News

Stanford expert on back pain: “The important thing for people to know is that it’s treatable”

BackPainSeptember is Pain Awareness Month and later this month, Stanford will host a Free Back Pain Education Day. The event, sponsored by the Division of Pain Medicine, offers community members the opportunity to come to campus and hear about current back pain management strategies and the latest research. The event will also be live-streamed via YouTube for people unable to make it in person.

In anticipation of the Sept. 13 event, I sat down with Beth Darnall, PhD, a pain psychologist at Stanford’s Pain Management Center, and one of the day’s speakers. I was interested to understand why back pain is such a critical health problem worldwide and what people living with back pain can do to manage their pain.

Back pain is a leading cause of disability in the U.S. and other countries. Why is chronic back pain so common?

I think there are many different reasons why back pain is the number one pain condition. The back seems to be the place that’s really most related to the development of chronic pain and debility from chronic pain. Pregnancy can either trigger or flare back pain, but there are a multitude of reasons: aging (there is degeneration of the spine), obesity (when people gain weight, it puts additional load on the spine), activity levels, and influence of posture. Dr. Sean Mackey will be talking about some of the reasons why back pain is the most prevalent pain condition in the world at the event.

[Back pain] is something that almost everyone will experience at some point in their lifetimes, so it’s really relevant to all of us, whether we have pain now or not.

Why have a community event about back pain now?

There has been increasing global and national attention to chronic pain in terms of its impacts and costs to society. In the United States alone, 100 million suffer from pain on a regular basis, and that is associated with costs of $635 billion dollars annually. That includes treatment costs and loss of productivity.

What we also know is that the incidence and prevalence of chronic pain has been increasing, despite the fact that theoretically, we have better treatments. So then the question is why. While we have a multitude of treatments available, we haven’t been focusing on back pain as comprehensively as we really should. We need a broader approach to the treatment of pain. This was recently outlined in the National Institute of Health’s National Pain Strategy (Note: Mackey co-chaired the oversight committee).

Some people may be under the misconception that the best way to treat back pain is simply with a pill… While medication can be one helpful component, the best way to treat back pain is with a comprehensive approach that involves self-management strategies.

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Chronic Disease, Neuroscience, Pain, Research, Stanford News

Study: Effects of chronic pain on relationships can lead to emotional distress

Study: Effects of chronic pain on relationships can lead to emotional distress

sad womanIt’s not surprising that people living with chronic pain often have high levels of emotional distress. The question that Stanford researcher Drew Sturgeon, MD, a postdoctoral pain psychology fellow in the Stanford Pain Management Center, recently aimed to determine was why. Is a patient’s depression or anger caused by his or her inability to do physical things or is it perhaps because pain can limit social relationships?

“What I hear from patients is that it’s not just that it hurts, but that the pain takes you away from things that matter to you – the things that are meaningful to you,” Sturgeon recently said.

To explore this further, Sturgeon and colleagues analyzed data from 675 patients who came into the Stanford pain clinic and filled out data sets for the national open source Collaborative Health Outcomes Information Registry, referred to as CHOIR. CHOIR is a registry that originated at the Stanford pain center to help improve the collection and reporting of data on pain.

The researchers examined both physical functioning and social satisfaction reported by chronic pain patients, since both have been shown to play a role in causing anger and depression. Their results — published online recently in the journal Pain — show that the effects of chronic pain on a patient’s social relationships can be a key trigger of depression and anger, even more so than the limits that pain can place on physical activity.

“My suspicion was that there was going to be a stronger frustration when [the pain] affects social relations,” Sturgeon told me. “Relationships are one of the strongest predictors of mood. If you’re an avid bicyclist and can no longer cycle, that’s frustrating. But if cycling is the primary source of your social relationships, that’s even more frustrating.”

“The conversation when you have a patient with chronic pain who is very depressed tends to [focus on] how we treat the pain,” he continued. “Perhaps considering how the pain is affecting the people around the patient is also important… This is something that as a field we haven’t been paying very good attention to.”

Previously: National survey reveals extent of Americans living with pain, Chronic pain: getting your head around it and Advances in pain research and treatment
Photo by rochelle hartman

Addiction, Aging, Chronic Disease, Pain

National survey reveals extent of Americans living with pain

National survey reveals extent of Americans living with pain


Yesterday, the NIH announced a new analysis of data that examined how much pain people in America suffer. The findings, published in The Journal of Pain, were based on data from the 2012 National Health Interview Survey (NHIS), an annual survey that asks a random sample of U.S. residents a wide variety of questions about their health.

The survey results are staggering: More than half of the adults in the country (126 million) had some kind of pain, minor to severe, in the three months before the survey. About 25 million had pain every day for that time frame and about 40 million suffer from severe pain. Those with the worst pain were also most likely to have worse health in general, use more health services and have more disabilities.

The survey also looked at complementary medicine approaches people take to dealing with their pain. Natural dietary supplements topped the list, followed by deep breathing and physical exercise such as yoga, tai chi or qi gong.

Joseph Briggs, director of the National Center for Complementary and Integrative Health was quoted in an article about the new study in the Washington Post:

The number of people who suffer from severe and lasting pain is striking. . . This analysis adds valuable new scope to our understanding of pain … It may help shape future research, development and targeting of effective pain interventions, including complementary health approaches.

Another topic the WaPo article touched on, which we’ve written about here at Scope, is the link between chronic pain and prescription painkiller abuse:

The prevalence of chronic pain in America also lies at the root of an ongoing epidemic of prescription painkiller abuse. Since 1999, according to the Centers for Disease Control and Prevention, the amount of painkillers such as oxycodone and hydrocodone sold in the United States has nearly quadrupled.

Here at Stanford, the Division of Pain Medicine is sponsoring a free back pain education day on Saturday September 13. You can find out more details here.

Previously: Assessing the opioid overdose epidemicChronic pain: Getting your head around itFinding relief from lower back pain and Stanford researchers address the complexities of chronic pain
Photo by Steven Depolo

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