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Chronic Disease

Chronic Disease, Parenting

“I’d rather bury my child than leave him behind”: Mother of developmentally disabled child on redefining parenthood

"I'd rather bury my child than leave him behind": Mother of developmentally disabled child on redefining parenthood

As a mom of two, I found myself doing a double-take when I came across a recent Huffington Post headline: “Bury My Son Before I Die.” In the moving, difficult-to-read (and, presumably difficult-to-write) piece, the mother of a boy with lissencephaly who is “developmentally… like an infant in a 15-year-old body” describes caring for him and worrying what might happen to him as he grows older. “It goes against everything we believe about motherhood, but I’d rather bury my child than leave him behind,” she writes, before going on to explain:

I used to worry about Benjamin dying, but now, 15 years in, I worry about him surviving beyond my husband and me. Only we have comforted Benjamin through daily seizures and seven surgeries. We are his one true voice. No one can understand Benjamin the way we do.

I have learned to embrace motherhood with brutal honesty. I don’t actually want to see my son take his last breath. I don’t want to know life without him. For as long as I live, I will do whatever I can to keep Benjamin healthy and give him the best possible quality of life. His happiness is my happiness. He is no less than anyone else, deserves every right and consideration. As Benjamin’s advocate I can guarantee a strong proactive force. When I’m gone, I can do no more.

Chronic Disease, Health Costs, Health Policy, Nutrition, Obesity, Stanford News

Study shows banning soda purchases using food stamps would reduce obesity and type-2 diabetes

Study shows banning soda purchases using food stamps would reduce obesity and type-2 diabetes

soda

In the late 1800s and early 1900s, carbonated beverages such as Coca-Cola, Dr Pepper and 7UP were sold as nerve tonics and health drinks. But, we now know that sugary sodas contribute to obesity, type-2 diabetes and cavities. Still, most Americans drink more soda than they like to admit.

Even though sugar-laden soft drinks have no nutritional value, they are still eligible for food stamps. Nutrition researchers and some politicians have advocated for a ban on buying sugar-sweetened drinks with food stamps but the U.S. Department of Agriculture, which runs the program, is under tremendous pressure from beverage company lobbyists to keep the existing regulations.

Sugary drinks are especially concerning because too many liquid calories put consumers at a higher risk of developing type-2 diabetes. Some nutrition experts are concerned that taxpayers are subsidizing an unhealthy diet, which will result in higher medical costs for Medicare and Medicaid down the road, when food stamp recipients experience the health problems associated with obesity and diabetes.

In a new study (subscription required) published in this month’s Health Affairs, Sanjay Basu, MD, PhD, an assistant professor of medicine at the Stanford Prevention Research Center, and his colleagues created a computer model to simulate the effects of a soda ban on the health of food stamp recipients. They found that obesity would drop by 1.12 percent for adults, and by 0.41 percent for children, affecting about 281,000 adults and 141,000 children. Type-2 diabetes would also drop by 2.3 percent.

The researchers also calculated the effects of reimbursing participants 30-cents for each dollar spent on fruits and vegetables. The subsidy did not affect obesity or diabetes rates, but doubled the number of people who ate the recommended number of fruits and vegetables each day. A county in Massachusetts tried the same reimbursement system as part of the USDA’s Healthy Incentives pilot study, and saw a similar increase in the fruit and vegetable purchases of food stamp recipients.

“It’s really hard to get people to eat their broccoli,” said Basu in a press release. “You have to make it really cheap, and even then, sometimes people don’t know what to do with it.” But, with one in seven Americans receiving food stamps, he points out that these small changes can have wide-ranging effects.

“It’s very rare that we can reach that many people with one policy change and just one program.”

Patricia Waldron is a science writing intern in the medical school’s Office of Communication & Public Affairs.

Previously: Food stamps and sodas: Stanford pediatrician weighs inCan food stamps help lighten America’s obesity epidemic? and Stanford’s Sanjay Basu named a Top Global Thinker of 2013
Photo by Andy Schultz

Chronic Disease

Living with Ehlers-Danlos Syndrome: “Sometimes I just don’t have it in me to be inspirational”

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 bonus column comes from previous contributor Michael Bihovsky.

I have a connective tissue disorder named Ehlers-Danlos Syndrome. It’s a genetic collagen defect that results in super lax ligaments and tendons, creating frequent joint dislocations, cartilage tears, chronic muscle spasms, and much more. May is Ehlers-Danlos Awareness Month.

Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies

Usually I take this opportunity to say something inspiring, about how my illness has changed me for the better and given me a clear purpose in life for both the work I do and the person I want to be. While all these things are true, the fact is that sometimes I’m in a physical state where I just don’t have it in me to be inspirational. And that’s all right – inspirational words are meaningless without the context of genuine human struggle. So, if you’re interested – and if you’ll bear with me – I’d like to take this opportunity to talk about EDS in its rawest sense, and to do my part to tell you about the very serious disease it is.

When I was a child, I got sick… and I never got better. And I never will. When I was finally diagnosed with EDS, it was made clear to me that there was no cure for my condition. The best we could do was try to manage and slow the symptoms – symptoms that were pretty much guaranteed, in the long run, to get worse. I have done the best I can with this knowledge. I’ve tried to make the most of the life I’ve been given, and whenever possible to keep a smile on my face and hope in my heart. But it’s been very hard. Every EDS patient knows that one of the hardest parts of our day is the moment we open our eyes and waken into the reality of our bodies, stirred from dreams of ourselves as we used to be, and the futures we imagined we’d have.

EDS is considered a rare disease, but every year the suspected percentage of those afflicted rises dramatically. The disease is notoriously underdiagnosed because doctors themselves don’t usually know about it, and are only able to start diagnosing patients when a textbook case (such as myself) walks into their office and physically demonstrates what it is. The devastating irony is that EDS is actually one of the simplest diseases to diagnose – all you really need is a protractor, and an online guide to a system of criteria known as the Beighton Scale. Then take this to your doctor for confirmation. When I performed these tests on myself a few years ago and then went to my doctors asking “What do you know about Ehlers-Danlos Syndrome?”, the deer-in-the-headlights look was as unanimous as it was unnerving.

So for anyone out there suffering from chronic pain, or other strange symptoms, please look into this. Or if you have a friend in physical distress, please pass on this information. EDS is a scary and challenging diagnosis, but the consequences of not knowing are far greater than that of a correct diagnosis. EDS symptoms can range from the very mild to the extremely severe. One thing is certain, though: If I had received a diagnosis back when my symptoms were mild, I would be living a very different life now. Every single day, in my struggle to actualize the person I still can be, I cannot help but mourn the person I could have been.

To the many people out there reading this who have EDS, or any other chronic illness, “invisible” or not – thank you for being my brothers and sisters. Take care of yourselves, and take care of each other. And remember that healing others may very well be the clearest path to healing ourselves.

Michael Bihovsky is a musical theater composer and performer, and an “invisible illness” advocate. He is best known for his viral YouTube video “One Grain More,” a musical parody of Les Miserables about the plight of the food allergy community. Michael has also written an original musical, “Fresh!,” which tells the semi-autobiographical story of a group of college freshmen overcoming physical and emotional adversity amidst the craziness of college, and he is currently writing a book titled “Live Because: The Philosophy of the Broken, and the Journey Toward Wholeness.” For more information, visit www.livebecause.com.

Previously: “Live Because:” Living a fuller life with chronic illness

Chronic Disease, Health Costs, Health Policy, Research, Stanford News

Keeping kidney failure patients out of the hospital

Keeping kidney failure patients out of the hospital

Keeping kidney patients healthy enough to stay out of the hospital certainly sounds like a good thing – both for the patients and the economy. Now there’s scientific evidence to show how this can be done.

Reducing hospital readmissions was a focus of the the Affordable Care Act, and Kevin Erickson, MD, an instructor in nephrology at Stanford, decided to study a group of patients who are often hospitalized. He and his colleagues examined whether an additional doctor’s visit in the month after hospital discharge would help keep kidney-failure patients on dialysis from being readmitted. He and his colleagues analyzed data collected between 2004-2009 by the United States Renal Data System, a national registry of nearly all end-stage renal disease patients in the country.

It’s nice to find something that may generate both cost savings and better health outcomes

Results showed that there was a significant reduction in hospital readmissions with that extra doctor’s visit in the month after hospital discharge. And while the percentage doesn’t sound all that significant – 3.5 percent -  in real numbers that translates to 31,370 fewer hospitalizations and $240 million per year saved, according to the study published this month in the Journal of the American Society of Nephrology.

“It’s nice to find something that may generate both cost savings and better health outcomes,” Erickson told me. “Patients with end-stage renal disease suffer from poor quality of life. Some of that I suspect is related to multiple trips in and out of the hospital.”

Patients with kidney failure are at a particularly high risk of hospital readmission: In 2009 patients getting dialysis were admitted to the hospital nearly two times per year, 36 percent of whom were rehospitalized within 30 days, according to the study.

Previously: Study shows higher Medicaid coverage leads to lower kidney failure rates; Study shows higher rates of untreated kidney failure among older adults; Study shows daily dialysis may boost patients’ heart function, physical health.

Chronic Disease, Health Policy, Nutrition, Obesity, Pediatrics, Videos

Fed Up: A documentary looks for answers about childhood obesity

Fed Up: A documentary looks for answers about childhood obesity

I can’t wait to see Fed Up, a new documentary about childhood obesity.

In the early 2000s, when I was earning a PhD in nutrition at UC Davis, I heard a lot of scientific debate about possible causes of the U.S. obesity epidemic. Was it too much fat in our diets? Too much sugar? Processed food? Junk food ads on TV? An “obesogenic environment” – one in which snacks are ubiquitous, adults drive everywhere and neighborhoods aren’t safe enough for kids to play outside?

Or was it something else?

“The message has been pushed on us: It’s your fault you’re fat,” says Mark Hyman, MD, chair of the Institute for Functional Medicine, in the Fed Up trailer above.

The movie assembles an impressive roster of experts in nutrition research, pediatric health and public advocacy to oppose that message. Michael Pollan, Mark Bittman, Robert Lustig, Marion Nestle, Harvey Karp, former President Bill Clinton and others say we should not be blaming individuals – especially kids – for struggles with their weight. Instead, they are taking a hard look for answers at the food environment.

“This is the first generation of American children expected to lead shorter lives than their parents,” says a voice-over in the Fed Up trailer. That definitely makes untangling the causes of the obesity epidemic worthy of the efforts of our best scientists. Like I said, I can’t wait to see it.

Previously: Childhood obesity a risk for imminent heart problems, research shows, Using hip hop to teach children about healthy habits and Sugar intake, diabetes and kids: Q&A with a pediatric obesity expert
Via Food Politics

Chronic Disease, Clinical Trials, Pediatrics, Research

New research shows how to keep diabetics safer during sleep

New research shows how to keep diabetics safer during sleep

sleeping girlLife with type 1 diabetes requires an astonishing number of health-related decisions – about 180 per day. But patients’ vigilant monitoring of their daytime blood sugar, food intake, insulin and activity levels is perhaps less exhausting than the worries they face about getting a safe night’s sleep. During sleep, diabetics often fail to sense when their blood glucose veers too low. Low blood sugar levels can cause seizures and even, in rare cases, death.

“At night you lose control,” said Bruce Buckingham, MD, a pediatric endocrinologist who treats children with diabetes at Lucile Packard Children’s Hospital Stanford. “It’s when things can happen.” Among children with diabetes, about 75 percent of hypoglycemic seizures occur at night, he said.

That’s why Buckingham and his colleagues across the United States and Canada have been testing various methods to automate blood sugar control during sleep. Our press release on their new research describes an approach that could make a big difference – automated shut-offs of patients’ insulin pumps to keep their sugar levels above the hypoglycemia danger zone:

The new study, which [appeared] online May 7 in Diabetes Care, coupled a glucose sensor worn under the skin to an insulin pump that was connected wirelessly to a computer at the bedside. The computer ran an algorithm that calculated when a low blood-sugar level might occur and then temporarily suspended insulin delivery until the sugar level was trending upward. This occurred without waking the patient. The shutoffs reduced the cumulative time patients spent with low blood sugars during sleep by 81 percent, with only a minimal increase in nighttime glucose levels.

“A system like this should dramatically decrease diabetics’ risk of having a seizure overnight,” said Bruce Buckingham, MD, professor of pediatric endocrinology at Stanford, who led the trial and is a co-author of the study. “Patients and parents will be able to have a better night’s sleep, knowing that there is a much lower risk of severe hypoglcyemia at night.”

During the study, the researchers monitored close to 2,000 nights of sleep in 45 people with type 1 diabetes. The patients, who were 15 to 45 years of age, slept in their own homes and didn’t know ahead of time which nights their insulin pumps could be shut off by the computer and which nights their pumps operated normally. Several measures of hypoglycemia indicated that patients were safer on treatment versus control nights. Morning blood sugar levels were slightly higher after treatment nights, but still within the healthy range.

To get a sense of what the results mean for patients and their families, I spoke with Jack Leguria, whose 14-year-old daughter, Rosa, has had type 1 diabetes for almost 10 years. Rosa participated in the second phase of Buckingham’s research, which is now testing whether the benefits his team documented for older teenagers and adults will extend to children as young as 3. Seeing the new technology in action was exciting for Rosa and her parents.

“This is going to be life-altering for us,” Leguria said. “In four years, Rosa will be ready for college. For a child with type 1 diabetes who is not able to recognize low blood sugar at night, that’s a very difficult prospect for us.”

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Chronic Disease, Orthopedics, Pain

Finding relief from lower back pain

lower back painIf you thought a pain in the neck was inconvenient, try on chronic lower back pain for size. (Just kidding – both sound uncomfortable.) In a recent article, Prevention magazine suggests easily administered treatments for the latter kind of pain. Tips include paying attention to your body by noticing if you pronate your feet, taking action by attending yoga classes, and winding down with massage or acupuncture sessions.

Recognizing that back pain’s sometimes intractable nature can cause stress in other forms, the piece continues:

No, the pain isn’t in your head. But what is in your head could be making it worse. “Fear, anxiety, and catastrophizing can amplify pain,” says [Stanford anesthesiologist Sean Mackey, MD, PhD]. “People often get swept up in thoughts like This will never get better.” Because brain circuits that process pain overlap dramatically with circuits involved with emotions, panic can translate into actual pain. Cognitive-behavioral therapy helps you recognize and reframe negative thoughts. Deep breathing can help, too, as can simply shining a light on dark thoughts. “Start by accepting that you have pain,” Mackey says. “Then say to yourself, It will get better.”

Previously: Stanford researchers address the complexities of chronic painExploring the mystery of painExploring the use of yoga to improve the health and strength of bones and Ask Stanford Med: Pain expert responds to questions on integrative medicine
Via @StanfordHosp
Photo by U.S. Army

Autoimmune Disease, Chronic Disease, Clinical Trials, Patient Care

Two decades with scleroderma: How I find answers to hard-to-solve questions

The day I was diagnosed with scleroderma 21 years ago was devastating for my parents and me, to say the least. I was 15 years old and I remember thinking: I have what? Scleroderma? What is that? Can you spell that?

Not much was known about the disease and, since the Internet was in its infancy, we couldn’t simply Google “scleroderma” to learn more about it or find support groups. There was no one to bounce off ideas with. My father, who was a diligent researcher, consulted medical textbooks. Meanwhile, my mother, who was born with the “gift of gab,” sought information from anyone and everyone who crossed her path. But ultimately we were forced to rely heavily on doctors’ recommendations, which sadly were pretty gloomy and a bit much for a teenager to handle.

Fast forward to today. When I have a question, I connect with my local chapter of the Scleroderma Foundation, either by e-mailing a board member or by attending a support group meeting. I also go online to the Raynauds Association, Scleroderma Foundation and Pulmonary Hypertension Association. Above all it’s important to find a rheumatologist who is not only knowledgeable about scleroderma, but has a good grasp of its complexities and is willing to help you get the results you need. Trust me – they are out there!

Back in 2004, I decided it was time to get a new rheumatologist. I asked around for recommendations from my personal network and a friend with rheumatoid arthritis suggested I see her physician. Before meeting the doctor, I looked at his online reviews from other patients and his curriculum vitae to get a sense of his academic and professional experience and achievements. When meeting with a new physician, it’s important to ask if she/he has treated other scleroderma patients, gauge their knowledge of clinical trials, find out if they are up to date on the medications being used to treat the different facets of the disease, and make sure they understand the importance of certain annual tests.

When I switched rheumatologists, I had a particular problem I needed to solve. For the most part my illness had become stable, but I had one pesky ulcer that was truly relentless! I tried various calcium channel blockers, ACE Inhibitors, and Vasodilators, and nothing worked. The infections were getting out of control, even though I did my best to stay on top of it. My frustration reached a point where I asked my doctor to “please, remove the first flange of my index finger.” Thankfully he refused and said, “No, we’re not going to give up.”

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Autoimmune Disease, Chronic Disease, Patient Care, Pediatrics

A wake-up call from a young e-patient: “I need to be heard”

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 chronic diseases share their unique stories. Our latest comes from 15-year-old Morgan Gleason, who lives with the autoimmune disease juvenile dermatomyositis. 

Before June 18, 2010, the day I was diagnosed, I knew the medical system the way that most kids do. I went to the doctor for immunizations, physicals, sore throats and bones that might be broken. Then, I developed a rash on my joints. I started sleeping more than normal, was very weak in my muscles, and experienced frequent stomachaches and headaches.

At the age of 11, after a year of these symptoms, I was diagnosed with a rare autoimmune disease called juvenile dermatomyositis. I suddenly was in a whole new medical system. I had to learn to swallow pills, wait for hours in doctors offices, spend nights in the hospital, worry about what was happening, deal with some not-so-nice doctors and nurses, and endure a lot of pain. I also watched my parents get frustrated with figuring out medical bills and trying to understand all of the claim statements and appeal denials.

Now I take 21 pills a day, get two infusions a month by an IV, and give myself an injection once a week. I have more specialists than my grandparents, and I spend a lot of time as a patient.

This January, I was hospitalized for the second time in four months for meningitis due to a reaction from a treatment I received. After four days of little sleep and an excruciating headache, I made a video about my hospital experience and posted it online. To my surprise, the video got a lot of attention. Forbes, Time, the Huffington Post and other outlets wrote about it. I believe that the video was popular because my experience was a common one and struck a nerve with others.

I am appreciative of the care I have been given. I love the hospital where I get my treatment, and I think it’s a great hospital. The medical students, residents, attending physicians, and specialists are great doctors. The nurses are also really great. This is not an issue with the individual people or hospitals. The issue is much bigger, and it’s the way the system as a whole is designed.

My video had a few main points. I was frustrated that I couldn’t get any rest in the hospital. The system is designed around the schedules of the doctors and the desire to discharge patients by noon instead of around the circumstances and needs of the patient. Second, the doctors come in individually instead of coming together and addressing all the concerns at one time. Third, when patients are awoken from deep sleep, they’re not going to be as engaged as they would be when they are alert and comfortable. Finally, patients, and even children and teenagers, appreciate having the doctor talk with them instead of having the doctors talk over them or away from them in the hallway.

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Ask Stanford Med, Chronic Disease, Clinical Trials, Patient Care

Ask Stanford Med: A focus on scleroderma

Ask Stanford Med: A focus on scleroderma

Melissa Warde’s life was forever changed 21 years ago when, at the age of 15, she was diagnosed with scleroderma. At the time, little was known about the chronic connective tissue disease, which involves the hardening and tightening of the skin and fibers that provide the framework and support for the body. “I knew from that day forward, I could sit back and wait for the disease to progress or I could, to the best of my ability, work to control the disease within myself,” Warde said during an Ask Stanford Med Google+ Hangout last week. “I knew I had to have a cheerful disposition, despite the tragedy that I was dealt, and of course having a positive attitude really helped me to focus on the winnings of life.”

During the live conversation, Warde was joined by Lorinda Chung, MD, director of the Scleroderma Center and co-director of the Multidisciplinary Rheumatologic Dermatology Clinic at Stanford, and Karen Gottesman, patient services director for the Scleroderma Foundation of Southern California, for a panel on scleroderma research and progress being made to enhance patients’ quality of life.

Chung opened the discussion with an overview of recent modifications to the disease criteria used in diagnosing scleroderma. Since no two cases of scleroderma are alike, the disease can often be difficult to diagnosis. However, early detection (.pdf) is critical for improving patient outcomes. Under the new criteria, physicians are directed to look for symptoms such as puffy fingers, capillary changes in the nail folds or Raynaud’s disease, which is present in 90 percent of patients with systemic sclerosis. Chung said:

Previously, patients really had to have significant, pretty obvious, skin tightening in order to meet the classification criteria. Or have interstitial lung disease or pulmonary fibrosis, which is scarring in the basis of the lungs, in order to meet the criteria.

These new classification criteria will enable rheumatologists, who may be less experienced in scleroderma, to detect early signs and then refer [patients] appropriately for an accurate diagnosis.

Following Chung’s update on the modifications to the disease criteria, Gottesman spoke about how patients can mange stress related to learning they have a rare, incurable disease and continue living life to the fullest. She advised:

Really learn to be your own advocate. Part of that means educating yourself, not only on all the different aspects of the disease, but also on what type of scleroderma you have so you are aware of possible symptoms that come up.

I think what scares a lot of patients and is really stressful is when you hear of a disease that doesn’t have a cure. But you have to keep in mind that there are hundreds of diseases without cures and we have a lot of treatments in the toolbox to treat the symptoms. At the end of the day you have to learn to co-exist with the disease and that process is really different for every single patient.

Being a proactive patient, Gottesman said, also means being a compliant patient and following through on properly taking any prescribed medications, completing physician recommended tests and other instructions from health-care providers. She said, “If you have a different game plan in mind, then you really need to be upfront [with your doctor] about what it is you need and what you think you want to do, so that you can communicate. That will help you in the long run.”

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