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Chronic Disease

Chronic Disease, Clinical Trials, Mental Health, Research, Stanford News

Treating insulin resistance may speed recovery from major depression

Treating insulin resistance may speed recovery from major depression

depressionIn a randomized, placebo-controlled clinical trial detailed in this study in Psychiatry Research, pioglitazone – a generically available drug that’s approved for type 2 diabetes – helped to relieve symptoms of major depression in patients whose blues had withstood an assault by standard therapeutic regimens for six months or longer.

But this beneficial effect was seen only in depressed patients who were also insulin-resistant.

Depression is remarkably common. Stanford psychiatric researcher Natalie Rasgon, MD, PhD, the study’s senior author, told me that close to one in five Americans are diagnosed with depressive illness at some point in their lives.

Insulin resistance, a stepping stone on the path to type 2 diabetes (not to mention cardiovascular disease and probably Alzheimer’s), is even more common: About one in three otherwise healthy Americans – and an even greater share of people with depression – are insulin-resistant. Especially prevalent among overweight people, insulin resistance also occurs more often than one might expect even among thinner folks, a lot of whom don’t have the faintest idea that’s the case.

Insulin, released by the pancreas in response to food intake, alerts cells throughout the body to the presence of glucose, the body’s primary energy source, in the blood. Insulin-resistant people’s cells fail to take up glucose adequately, leaving high residual blood levels of the sugar to wreak havoc on the body’s tissues. Because the brain is a glucose glutton – it soaks up about 20 percent of all glucose consumption in a healthy, active person – it’s easy to imagine that lousy glucose uptake in the brain would have all kinds of deleterious effects, including effects on mood. Food for thought, anyway.

Here’s how my news release described the study:

[R]esearchers were blinded as to which patients were receiving pioglitazone versus a placebo. The patients didn’t know which they were getting, either. … All the patients had been experiencing episodes of depression lasting, on average, more than one year. Their symptoms had failed to remit under standard treatment regimens. They remained on these regimens for the duration of the Stanford study and, in addition, were given either pioglitazone or a placebo. … The patients were tested for depression severity and insulin resistance at the study’s outset and then roughly every two weeks from the beginning of the trial to the end.

A total of 37 patients – 29 women and eight men – completed the 12-week study. The insulin-sensitive subjects did about as well on the drug as they did on placebo. But among the insulin-resistant group, those given pioglitazone showed a much greater improvement than those who got a placebo. They also showed more improvement than insulin-sensitive patients did.

The more insulin-resistant a participant was at the beginning of the study, the better the drug’s antidepressant effect. Possible, but not proven, explanation: It could be that for some patients standard antidepressant therapies can kick into gear only once these patients’ insulin resistance is reduced. Hungry brains gotta eat.

Previously: Survey shows nearly a quarter of U.S. workers have been diagnosed with depression in their lifetime, Revealed: the brain’s molecular mechanism behind why we get the blues, and International led by Stanford researchers identifies gene linked to insulin resistance
Photo by S.Hart Photography

Chronic Disease, Events, Stanford News

A reminder before World Diabetes Day: “We need more people educated about the disease”

A reminder before World Diabetes Day: “We need more people educated about the disease"

Bay Area native Anna Simos had always been the healthy one in her family — never a candy eater, she said — but, at 15, she was diagnosed with what had been the traditional family illness: diabetes. “My grandmother and uncle had Type 1 diabetes and my father Type 2, so with that diagnosis, I knew what it meant,” she said. “It was sobering and I knew there was no easy way out.” She remembers that day quite clearly. “The doctor brought in a syringe with insulin and told me to give myself a shot. I asked him how many times do I do this every day? Probably four to six, he said. I was not happy.”

Over the years, and through a pancreas and two kidney transplants, Simos learned how to balance her diet, lifestyle, medications and essential medical equipment to live a life with Type 1 diabetes. “I had figured it out for myself, but I began meeting others with diabetes and I decided I would do something with this on-the-job training.” She also earned a master’s degree in public health and a master’s degree in the epidemiology of diabetes.

She received so much of her medical care at Stanford Health Care, she began to dream about what she could do to help there, too. Today, Simos, now a certified diabetes educator and diabetes clinical research coordinator at Stanford, will see one of her combined personal and professional goals met: Stanford Health Care’s first Diabetes Prevention and Wellness Health Fair, being held today in recognition of the upcoming World Diabetes Day.

The fair is a free, public event, and Charlie Kimball, a Formula 1 Indy car driver who has diabetes, will be there to talk about how his experience living with diabetes. Among the other features of the event: Fifteen non-profits and vendors, clinicians from Stanford Health Care and Stanford Children’s Health, and other diabetes education experts will offer free risk assessments, updates on diabetes care technology, food demonstrations and nutrition education. “Everyone’s coming together for the first time,” Simos said. “You’re going to learn something if you come, because it’s not just about diabetes — it’s also about prevention.”

Simos is pushed by the numbers: The Centers for Disease Control and Prevention estimates that 387 million adults have a form of diabetes. About 86 million American adults— more than 1 in 3 are pre-diabetic. That condition, defined by blood sugar levels that are above normal but not high enough for a Type 2 diagnosis, increases the risk of heart disease, stroke and Type 2 diabetes. “Diabetes and pre-diabetes are at epidemic levels,” Simos said. She knows how much easier it is to make the dietary and behavior changes than to develop the disease and possibly suffer the worst of its consequences. “We want to help prevent the transplant, the amputation, the blindness — that we can turn around with care,” she said. “We need more people educated about the disease. If we can just get people to start thinking about their risk factors, we can take a different approach to diabetes: prevention.”

Previously: A conversation about the diabetes epidemic and The role of nutrition in diabetes prevention and management
Photo, of Anna Simos meeting with patient Ed Grey earlier this week, by Norbert von der Groeben

Chronic Disease, Patient Care, Pediatrics, Stanford News

Helping kids with chronic medical conditions make the jump to adult care

Helping kids with chronic medical conditions make the jump to adult care

With just one dramatic example from her practice, Stanford pediatric critical care specialist Yana Vaks, MD, recently illustrated for me the importance of better adult health care for children who survive a catastrophic childhood illness or endure an incurable medical diagnosis.

“There was an 18-year-old who came to the hospital in crisis,” she said. “He had a liver transplant when he was 8, but when he turned 18 he wanted to start a new life and decided he was done with all that extra health consciousness his transplant meant.” The patient had stopped taking the drugs necessary to keep his body from rejecting the transplant and neglected to see his doctor regularly. By the time Vaks saw him, his transplanted liver had begun to fail, starting a catastrophic process that affects all body systems. “It was a shocking case,” she said. The teenager died the next day.

His mother told Vaks that the biggest challenge had been the 18th birthday, that legal coming of age where parents can no longer control what medications their children take.

As I did the reporting for a Stanford Medicine story called “When I Grow Up,” I was shocked to learn just how many young adults fall into the categories of survivor or chronically ill: They may soon represent 10 percent of the U.S. population ages 15 to 25. Before advances in treatment began saving so many lives, that population was just 1 percent.

The specialists who treat these growing children have long recognized the challenges related to this patient population: Young adults may be grown in body, but they aren’t always ready psychologically or socially to take full responsibility for consistently following complicated medical routines and practicing lifestyle restrictions. Nor are most adult care doctors trained in the after-effects of childhood cancer, for instance, or the lifelong need to monitor adults with childhood heart repairs.

What’s needed is something called transition care — but no one had studied just what that should look like. The Clinical Excellence Research Center, established in 2010 to study, design and demonstrate ways to improve health care while reducing costs, identified transition care as a good candidate for the changes it hopes to effect with its work. For two years, CERC gathered information, reviewed research, interviewed patients and families and visited hospitals around the country, and it has launched pilot programs – including one at Stanford Children’s Health – to test its recommendations:

The CERC team’s recommendations emphasize that pediatricians and pediatric specialty teams must be guides in this process: equipping patients and parents with information so they can anticipate the transition, coaching patients to develop the confidence and skills needed to manage their health, and locating and being available to specialists and primary care physicians who will need certain medical knowledge to care for their patients as adults.

Previously: Stanford Medicine magazine tells why a healthy childhood mattersStudy highlights childhood cancer survivors’ increased risk of future health problemsQuestioning whether physicians are equipped to care for childhood cancer survivors and Chronic illness in childhood: One patient’s story
Illustration by Daniel Horowitz

Chronic Disease, Infectious Disease, Microbiology, Research, Science, Stanford News

Bad actors: Viruses, pathogenic bacteria co-star in health-horrific biofilms

Bad actors: Viruses, pathogenic bacteria co-star in health-horrific biofilms

biofilmA group under the direction of Stanford infectious disease investigator Paul Bollyky, MD, PhD, has uncovered a criminal conspiracy between two microbial lowlifes that explains how some of medicine’s most recalcitrant bacterial infections resist being expunged.

In a study published today in Cell Host & Microbe, Bollyky and his associates reveal that bacterial pathogens responsible for a big chunk of chronic infections can team up with a type of virus that bacteria ordinarily consider their worst enemies to form biofilms, which, our news release on the study explains, are “slimy, antiobiotic-defying aggregates of bacteria and organic substances that stick to walls and inner linings of infected organs and to chronic wounds, making infections excruciatingly hard to eradicate.” More from that release:

Biofilms factor into 75 to 80 percent of hospital-acquired infections, such as those of the urinary tract, heart valves and knee-replacement prostheses, Bollyky said. “A familiar example of a biofilm is the plaque that forms on our teeth,” he said. “You can brush twice a day, but once that plaque’s in place you’re never going to get rid of it.”

The study first focused on Pseudamonas aeruginosa, which accounts for one in ten hospital-acquired infections, many chronic pneumonia cases and much of the air-passage obstruction afflicting cystic-fibrosis patients.

Cystic fibrosis is deadly mainly because of biofilms formed by P. aeruginosa, Bollyky told me. “These biofilms fill up all the air spaces, and antibiotics can’t seem to penetrate them,” he said.

But he and his colleagues found that P. aeruginosa forms biofilms only when it’s been infected itself.

Continue Reading »

Cardiovascular Medicine, Chronic Disease, Dermatology, Research, Stanford News

Limb compression device reduces skin infections caused by lymphedema

Limb compression device reduces skin infections caused by lymphedema

Key among the nasty problems caused by lymphedema, a common cardiovascular disease that causes limb and trunk swelling, is the risk of skin infection. Lymphedema causes the skin to thicken and become inelastic, which open the doors for infection to enter more easily; according to Stanford’s Stanley Rockson, MD, about 25 percent of lymphedema patients experience recurring infections that can result in hospitalization.

Thus the results of a recent study published in JAMA Dermatology offers some exciting news, says Rockson, a world renowned expert in lymphedema.

The fact that we saw dramatic reductions in the incidence in rate of infections… is very noteworthy

In the study, an advanced model of a pneumatic compression device used to treat lymphedema was found to reduce skin infections from the disease by nearly 80 percent. Rates of cellulitis, the medical term for such skin infections, were lowered from 21 percent to 4.5 percent in the people with lymphedema due to cancer and from 28.8 percent to 7.3 percent in individuals whose lymphedema was not due to cancer.

Pneumatic compression devices, which have been in use for decades, are inflatable garments that when applied to the swollen area of the skin inflate and deflate in cycles to help drain lymph fluid build up. Most of these devices simply apply an increasing degree of pressure from the garment, but the model used in this study goes a step further. As Rockson, a co-author on the study, explains in a podcast accompanying the journal article:

This device works not just by adding pressure… It actually intends to simulate the intervention used by physical therapists when they do manual lymphatic massage. It places very low pressure stress on the skin increasing the filling of the lymphatic capillaries and thereby stimulating intrinsic contractility.

The idea is that the distribution of the pressure can be relegated and the treatment more targeted, he says.

“The fact that we saw dramatic reductions in both the incidence in rate of infections as well as the decreases in cost-related to care, ER visits, hospitalizations, intravenous antibiotics, is very noteworthy,” Rockson concludes.

The research was conducted at the University of Minnesota School of Public Health in collaboration with Vanderbilt University School of Nursing.

Previously: Home health care treatments for lymphedema patients cut costs and improve care; New Stanford registry to track lymphedema in breast cancer patients.

Chronic Disease, Dermatology, Immunology, Pain, Research, Science, Stanford News

Stanford researchers investigate source of scarring

Stanford researchers investigate source of scarring

2570500512_22e7fdcd48_zIf you’ve ever had a piercing that you’ve let grow closed, you’ll know that the healing process isn’t perfect. There’s almost always a little dimple to remind you of that perhaps questionable choice you may (or may not) have made during early adulthood.

Now former Stanford pediatric dermatologist Thomas Leung, MD, PhD, and developmental biologist Seung Kim, MD, PhD, have published some interesting research in Genes and Development regarding the healing and scarring process. Their findings may one day lead to advances in regenerative medicine.

As Leung, who is now an assistant professor at the University of Pennsylvania’s Perelman School of Medicine explained in an email to me:

One of the great mysteries in biology is how salamanders and worms regenerate lost body parts following trauma. In contrast to wound healing, tissue regeneration restores tissue to their original architecture and function, without a scar.  Although less dramatic, a few examples of mammalian tissue regeneration exist, including liver and digit tip regeneration.  These examples suggest that the underlying mechanisms driving tissue regeneration may still be intact in humans and perhaps we may use them for regenerative medicine.

The researchers studied how the ears of mice heal from a hole punched through the thin tissue (much like  ear piercing in humans). In many strains of mice, the holes partially fill but remain visible. In a few others, the holes heal with little perceptible scarring. Leung and Kim found that the strains of mice that heal well lack production of a protein that normally recruits white blood cells to the injury; blocking the ability of the protein, called Sdf1, to signal to the white blood cells resulted in enhanced tissue regeneration and less scarring in mice that would normally have been unable to close the hole.

Because the drug used to block Sdf1 signalling is already used clinically in humans for another purpose, Leung is hopeful that it can quickly be tested in humans struggling to heal  chronic or slow-healing wounds. He is currently designing a clinical trial to test the drug, called AMD3100.

The implications of improved wound healing with less scarring stand to benefit many more people than just those wishing away the physical evidence of a hasty cosmetic decision. Tens of millions of surgical incisions are made every year, and not all heal well. Scar tissue is less flexible than normal skin and can significantly interfere with function. In addition, people with certain medical conditions such as diabetes or poor circulation can face ongoing disability or amputation when wounds don’t heal. But the group that inspired Leung to conduct the research is especially poignant.

As Leung explained:

 The inspiration for this work was driven by our clinical experience.  At Stanford, I co-directed the Epidermolysis Bullosa (EB) clinic.  EB is a rare genetic skin disease (about eight babies are affected per million births in this country), where affected patients lack a protein that binds the skin together, resulting in fragile skin. Incidental trauma like rubbing of skin against clothing tears the skin and leaves a scar.  This endless cycle of trauma and scarring and fibrosis inevitably leads to decreased joint function and complete loss of hand function by teenage years.

My recent article for Stanford Medicine magazine and the accompanying video shed light on this devastating condition. Even a small improvement in the pain these children suffer would be a tremendous step forward. And, although Kim emphasizes that greater feats in regenerative medicine (limb regeneration, anyone?) are still years of research away, this finding shows that we’re making progress.

Previously: Limb regeneration mysteries revealed in Stanford studyTo boldly go into a scar-free future: Stanford researchers tackle wound healing and Life with epidermolysis bullosa: “Pain is my reality, pain is my normal”
Photo by The Guy with the Yellow Bike

Chronic Disease, Imaging, Pediatrics, Research, Stanford News

Why chronic disease harms kids’ bone development — and what to do about it

Why chronic disease harms kids' bone development — and what to do about it

osteoporosis“Someone once told me listening to me talk is like drinking from a fire hose,” Mary Leonard, MD, said to me at the end of our recent 45-minute interview. I had precisely the opposite reaction: After I left her office at Stanford Hospital, I was so parched from our conversation I walked across the street, bought a bottle of water and downed the whole thing.

Leonard, a professor of pediatrics and of medicine, has a sense of urgency for a reason: She’s trying to make sure children with chronic diseases build as much bone as possible before puberty ends. Once that window closes, she and other researchers believe, it’s too late to do much about it. And the likely consequence of emerging from adolescence with inadequate bone mass is early osteoporosis.

“Kids with kidney disease are, even as children, fracturing more than you would expect,” Leonard said. “Kids with arthritis are fracturing more than you would expect.” Ditto those with congenital heart disease, organ or bone marrow transplants, inflammatory bowel disease, cerebral palsy, muscular dystrophy or a history of cancer. The culprits: inflammation, immobility, malnutrition, stunted growth, steroid treatment or a combination thereof.

Leonard’s work fits in perfectly with the most recent issue of Stanford Medicine, which is all about how early experiences can have far-reaching consequences for our health. As she says in my story about her research program:

We believe that once you go through puberty, you’re not getting that bone back. I feel like we’ve described and described the problem, and now we need to do clinical trials to see what we can do to improve bone health in these patients. We just want to make sure they go into adulthood with the best, strongest skeleton possible — with bones to last a lifetime.

Leonard has several ideas about what would help — exercise interventions, medications, more aggressive treatment of the underlying condition at younger ages — and state-of-the-art imaging equipment with which to assess them. “We’re on the cusp,” she told me with excitement, “of transitioning from describing and describing to actually doing something.”

Previously: Stanford Medicine magazine tells why a healthy childhood matters, Pediatric nephrologist Mary Leonard discusses bone health in children with chronic diseases at Childx and Pediatrics group issues new recommendations for building strong bones in kids
Photo by Sebastian Kaulitzki/Shutterstock

Chronic Disease

Laughing through the pain: A comedy writer’s experience with chronic illness

Laughing through the pain: A comedy writer's experience with chronic illness

We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, on 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 Los Angeles woman with Ehlers-Danlos Syndrome.

woman laughing2When you fall down at least once a week, you learn to laugh it off. No matter how much it hurts, you laugh because you know it makes other people more comfortable with what’s going on. If they believe you’re all right, your story is a comedy rather than a tragedy. I’m quite sure that this lesson I learned as a child (and have called on hundreds of times since) had a big part in my decision to become a comedy writer and performer, a career I began a decade before I was finally diagnosed with Ehlers-Danlos Syndrome.

Everyone with my rare connective tissue disorder knows the routine of explaining our condition to others. I like to gauge at what point a healthy person’s eyes glaze over and they check out completely; it’s usually around when I get to my issues that are caused by EDS, like arthritis and gastroparesis. After my first few monotonous rundowns of what ails me failed to enthrall anyone, I began weaving elements of humor into my explanations: “I have hip dysplasia, so I can’t be in the Westminster dog show… My joints hyperextend, which is great for sex but terrible for JV soccer… I tore my hamstring in Greece, but it’s not like that’s the worst thing that ever happened there.” Once engaged, people are much more likely to find some aspect of my condition that interests them and ask about that. This type of light interaction is far more comfortable than feeling like I’m teaching an NIH seminar on some disease nobody cares about.

In my experience, the people who really appreciate someone with a sense of humor are those I rely on most: Doctors and nurses. Just after my diagnosis, I was so confused and in so much pain that I was relatively curt with medical professionals. I also thought that if I even smiled, they would think I was faking my illness. But once my symptoms started to improve a bit and I understood more about what was happening, I tried being open and jovial with those who were treating me. The result was great; it should not have come as a surprise that a doctor who likes his patient is more likely to pay attention to her. Regardless of how badly I feel or how much I think something devastating may be happening to my body, I now try my hardest to make whatever dumb jokes I can manage in the hospital or at the doctor’s office. The staff members, many of whom somehow make it through day after day of maudlin events and miserable people, respond quite positively to my Tommy Boy quotes and ridiculous metaphors about how the exam room smells like a robot dog’s pee. (In fact, I would like to think I get better treatment because of David Spade.)

The need to laugh off my issues has become so innate that it is now my first response when I go into shock. My old roommate loves to tell the story of when I stepped onto our back porch and it looked like a sniper hit me: I was down in an instant. She ran out to see what was wrong and found me laughing hysterically, screaming, “I’m fine! Everything’s fine!” When I saw her worried, maternal expression, it made me even more afraid; I knew I had to alleviate her concern for both of our sakes, so I kept up my laughing and made jokes even as the unbelievable pain set in. As it turns out, I had ruptured my Achilles tendon and torn my calf muscle so badly that the orthopedic surgeon said it looked “like pulled pork; like a zipper went down the whole thing from top to bottom.” Looking back, I laughed and joked to make my roommate think everything was fine – the way you would treat a toddler who fell down and looks to you to gauge the severity of his injuries – but really I was the toddler, and making myself laugh got me through it.

I do not know where my life would be without my love of comedy, nor how I would have made it through the ups and downs of Ehlers-Danlos Syndrome. When it comes to relating to people, passing time in the hospital, or just convincing ourselves that there’s a lighter side to almost every situation, the most important part of the human body is the funny bone.

Paula Dixon is a comedy writer and photographer based in Los Angeles. She is a graduate of the USC School of Cinematic Arts and the Spéos Institute of Photography in Paris. She will be returning soon with her humorous podcast The Chronic Life, which covers chronic illness as well as pop culture and personal revelations.

Photo by bruna camargo

Behavioral Science, Chronic Disease, Health and Fitness, Medical Apps, Technology

Can cute cat texts motivate patients to take their medication?

Can cute cat texts motivate patients to take their medication?

Sammie resizedThe right kind of motivation is key when you have a difficult or mundane task at hand. For example, when I wanted to learn Spanish, I tried several top-rated, online language tools to no avail because they felt like work to me. Then, half as a joke, my boyfriend suggested an app that associates Spanish phrases with images of cats acting out the meaning of the words. The app was so silly I used it often, and — to our amazement — it actually worked.

So when I saw this story on MedCity News about a company that plans to use cat photos to motivate people to take their medicine, I knew they were on to something. As the story explains, the texts are part of an online assistant that will pair irresistibly cute cat images with health prompts so the reminders are memorable and fun.

The company, called Memotext, plans to pilot test this tool on Type 2 diabetes patients (followed by patients with other chronic illnesses) to gain insights on the patients’ state of mind when they skip or forget to take a medication. They also hope to learn more about what can be done to change patients’ behavior so they’re able to follow their medication regimen better.

“We’re not only asking whether you did something, but why did you do it,” said Amos Adler, the company’s founder and president. Based on what I’ve learned about motivation so far, I think a cute cat text or two probably can’t hurt.

Previously: “Nudges” in health: Lessons from a fitness tracker on how to motivate patientsStudy offers clues on how to motivate Americans to change and Understanding the science and psychology of how habits work
Photo courtesy of Anna MacCormick

Chronic Disease, Palliative Care, Parenting, Pediatrics

Missing out on “normal”: Advice from an expert on how to help kids with serious illnesses

Missing out on "normal": Advice from an expert on how to help kids with serious illnesses

Erica Medina and mom Jan 2012 #2When I first met Erica Medina in 2012, she was already practiced at living in two worlds. Then 17, she loved the ordinary teenage realm of high school classes, basketball and volleyball games, and trips to the mall with her friends. But since her diagnosis with juvenile idiopathic arthritis at age 11, she had also spent a lot of time in the medical world, where she and her doctors struggled to manage the pain caused by a disease that has no cure.

The story I wrote about Erica explained how the two worlds sometimes collided:

Back pain made it taxing to sit through school lectures, go on field trips or walk through the mall with friends. It wasn’t just the pain that bothered her: “When I was younger I hated taking my meds,” Erica said, adding that it felt like “giving up” to take pain medicine.

Stephanie [Erica’s mom] was glad Erica’s doctors tackled this issue head-on. “They convinced her that treating pain has nothing to do with weakness,” she said.

Although juvenile idiopathic arthritis is fairly rare, Erica’s longing for normalcy is not. Children and teenagers with all kinds of chronic and serious conditions have the same desire, says pediatric psychologist Barbara Sourkes, PhD, who directs the palliative care program at Lucile Packard Children’s Hospital Stanford.

A big part of Sourkes’ role is to help children, teenagers and their families navigate the divide between living with a difficult diagnosis and simply being a kid. She’s summarized her insights about this in a thoughtful piece on the blog for Digging Deep, a publication designed to help kids facing health challenges. Young people like Erica “commute” between the normal and medical worlds, “an extraordinary challenge,” Sourkes says. From her piece, here is some of her advice for families and others on how to help:

Be aware and sensitive to the importance of feeling “normal” – as normal as possible – for all children and adolescents living with illness. While we typically focus more on adolescents’ desire to “fit in,” even very young children are sensitive to being “different.” Help them focus on and remember what aspects of their lives – and of themselves – are still the same despite the illness.

“Missing out on things” comes in two categories: (1) missing a specific, often special event or activity (e.g. a celebration, a trip) and (2) missing out on life in general (day-to-day daily life, in all its routine).

Adults tend to focus more on the first category, in part because these are events that stand out from the backdrop of daily life. Allow the child to express disappointment / anger / sadness at the prospect of missing the event – do not try to minimize these feelings. After the event, it is very important to let children know that people asked about them and that their presence was missed. It makes the “missing out on things” a little more shared and less one-sided. When realistically possible, promise the child that they will participate in a similar event at a future time.

The second category of “missing out on life in general” is more ongoing and subtle, and probably has more impact on adolescents than on young children. It is also harder to address, since it encompasses all the frustration and sadness of the impact of the illness. Most important is simply to listen to what the children say, without trying to distract them or “problem solve” or cheer them up. These are times that they may just want to be heard and to have their hardship acknowledged.

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