chronic illness


Midnight Friends: How Wired Patients Are Transforming Chronic Illness



By Nell Lake
Guest contributor

Over the years, I’ve watched my cousin Deborah Haber struggle with several chronic, painful medical conditions, including fibromyalgia and a rare incurable disorder called Ehlers-Danlos Syndrome, a connective tissue disease that causes profuse sweating, a high heart rate and insomnia, among its many symptoms.

Largely housebound, and managing the life of her 11-year-old daughter, Deborah faces social isolation and persistent pain.

But along the way, my cousin has discovered a lifeline that’s lifted her outlook and improved her health. It combines the best qualities of a mother, best friend, therapist and trusted doctor to help her cope: it’s social media.

Deborah, 39, used to lie awake at night with “agonizing, shooting nerve pain,” feeling helpless and alone. She began going online, where she found others who were also awake and in pain; they became her midnight friends. “When you cannot sleep,” she says, “and you know your kid’s going to be up in a couple of hours, and you’re going to have to get her to school on time,” even if you’re exhausted — “knowing that you are not alone is a life-saver.”

With a rare and painful chronic condition, Deborah Haber found a lifeline: social media (Courtesy)

With a rare and painful chronic condition, Deborah Haber found a lifeline: social media (Courtesy)

Early on in her social media journey, Deborah mostly used Twitter. It was through people she met there that she learned about Ehlers-Danlos syndrome. She talked with her doctor, who did her own research and sent Haber to a specialist, who diagnosed the rare congenital disease. Deborah’s online activity, then, led directly to the diagnosis, which led to “far better care.”

Clearly, Deborah’s not alone: she’s part of a large and growing group of people with chronic illness in the U.S. who are using the Internet and other online technology to take charge of and improve their own health. This goes far beyond Googling your child’s weird rash: these millions of “empowered patients” are joining social-media communities, consulting online health databases, learning and sharing knowledge about drug side effects, crowdsourcing research studies, electronically monitoring their health and becoming health care activists who share what they’ve learned with their doctors.

Online patients with chronic illness use social media to improve both mental and physical health and to better connect with an understanding community, says Jennifer Covich Bordenick, chief executive officer of eHealth Initiative, which published a study earlier this year on patients’ social media patterns.

“It’s really incredible, if you look at what social media is allowing patients…to do right now,” she says. “It’s providing tremendous access to support, information, and it’s connecting people in a way that they haven’t been able to do before. … People with chronic illness are more motivated. … There’s an urgency there.” Continue reading

Life Lessons From An Ultra Rare, Potentially Fatal Disease

Sue Levy and her family on vacation in Buenos Aires fall 2013. (Courtesy)

Sue Levy and her family on vacation in Buenos Aires fall 2013. (Courtesy)

By Dr. Annie Brewster
Guest contributor

What if you were suddenly diagnosed with a potentially fatal disease just when your life, work and marriage were on track and your plans to start a family were underway?

That’s what happened to Sue R. Levy.

In 2008, at age 37, she was diagnosed with Pulmonary Lymphangioleiomyomatosis, otherwise known as LAM, a rare, chronic, progressive lung disease in which the lungs fill up with cysts. The result is gradual destruction of the normal lung architecture, compromised breathing and, in many cases, an eventual lung transplant — a procedure with major risks. The LAM Foundation reports 10-year survival, following a lung transplant, at 47 percent.

Fueled by estrogen, LAM primarily affects women in their childbearing years. With only 1,300 documented cases in North America, LAM is poorly understood; currently, there are a few experimental medications in use, but no proven treatments exist.

Prior to the diagnosis, Sue, who lives in Brookline, Mass., had a successful career as a marketing executive, she was happily married, and she and her husband had decided to have kids. Though they struggled with infertility, undergoing six unsuccessful rounds of IVF, Sue still felt that this would work out eventually.

“My whole life I thought the way the world worked is that if you were a good person and you worked hard you could avoid bad things,” she said. LAM changed everything.

Suddenly, Sue was forced to redefine herself as someone with a chronic disease and squarely face her own mortality. In addition, she had to let go of some of her dreams, notably, her desire to get pregnant, as the high levels of estrogen associated with carrying a child would accelerate her lung destruction.

Initially, she was angry. But the disease helped her focus on what she really cares about: she went to school to study nutrition and became a natural foods chef. In 2011, inspired by her own healthier lifestyle changes, she quit her marketing job and started Savory Living-Healthy Eating, a nutrition and health company that provides online healthy eating and cooking classes.

In addition, Sue and her husband now have two young daughters, conceived using egg donors and a gestational carrier.

Listen to Sue’s story here:

Interview highlights:

From ‘Healthy’ To ‘Terrifying’

If you had asked me before my LAM diagnosis I would have told you that I was a healthy person, that I am living a healthy life. There isn’t a disease in my family. This is something I don’t have to worry about and I’m doing great. What was so interesting is that the signs couldn’t have been clearer that I wasn’t. I was heavier, the energy wasn’t great. I had a lot of digestive problems and I faced infertility. But I just thought that was the way life was. I had had a lot of pain and it felt almost like this boa constrictor was around my midsection squeezing my rib cage.

So I went to the doctor and he said ‘You know I’m worried that maybe you have a blood clot in your lung, I want to go get a CT scan.’ And they did the scan and on our way back to our house I got a call from the doctor and he said ‘You need to come in right away,’ and I said ‘Oh, is it a blood clot in my lung?’ And he said no. And I said ‘Oh great!’ And he said ‘No, you need to come in right away.’

We got into the office and he actually said to me because he knew we were trying to conceive, and he said, ‘Life as you know it is about to change considerably. Continue reading

Opinion: New Diagnosis Risks 'It's All In Your Head' Response To Illness

Author Laurie Edwards (courtesy)

Author Laurie Edwards (courtesy)

By Laurie Edwards
Guest contributor

As a young woman, I was told more than once that my severe respiratory symptoms were perhaps “psychosomatic,” caused by stress or anxiety. Being sick enough to be in the intensive care unit was challenging enough; having my credibility called into question while I was struggling simply to breathe made the situation that much harder.

When biopsies confirmed that I had a rare genetic lung disease called primary ciliary dyskinesia, I had “proof” that my physical problems were just that—physical.

Unfortunately, not every condition lends itself to biopsies and concrete diagnostic tests, and that ambiguity leaves a hazardous gap that could soon be widened by a new psychiatric diagnosis.

Next month, the American Psychiatric Association will release the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders, or DSM-5. Critics have found plenty to complain about in this new edition of what’s considered the mental health diagnostic bible, including its redefinition of depression, but one of the most contentious changes is the inclusion of Somatic Symptom Disorder (SSD).

In short, the SSD diagnosis makes it much easier to diagnose physical symptoms as mental illness, and diminishes patients’ ability to report normal emotional responses to the upheaval that physical illness can cause.

To get a sense of why Somatic Symptom Disorder is a flawed diagnosis, consider this: Patients meet its criteria if they have at least one symptom disruptive to daily life for at least six months and at least one of the following:

• Disproportionate thoughts about the severity of their symptoms
• Heightened anxiety over their symptoms
• Spending too much time and energy on their health concerns

Does this sound like mental illness? Perhaps, depending on who is doing the listening and categorizing. But it also sounds a lot like the trajectory of many chronic illnesses, and that’s the problem.

The diagnosis ‘increases the chance they will be cast aside as histrionic’

No group has more to lose with the introduction of Somatic Symptom Disorder than patients who live with chronic pain conditions, a disproportionate number of whom are women.

Women are three times more likely to manifest autoimmune disorders than men, for example; they’re four times more likely to be diagnosed with chronic fatigue syndrome and nine times more likely to be diagnosed with fibromyalgia. Continue reading

Around The World, Living Longer But Not Living Better

(Vedant Gulati/Wikimedia Commons)

(Vedant Gulati/Wikimedia Commons)

By Judy Foreman
Guest Contributor

A massive new study out today shows that around the world, people are living longer than they did 20 years ago, but there’s a catch: many of these extra years are spent in poor health — in some cases with conditions that might be preventable or treatable.

The collaborative project, published in a special issue of The Lancet and led by researchers at the University of Washington and a consortium including the Harvard School of Public Health and the Johns Hopkins Bloomberg School of Public Health, found that some of the old scourges of humankind — infectious disease and childhood illnesses — that were once the leading causes of death have decreased dramatically, even in many developing areas. Deaths among children under five used to be the biggest contributor to the world’s health burden; now it’s chronic diseases that cause severe pain, impair mobility or keep people from seeing, hearing and “thinking clearly,” as the university put it in a statement.

But as childhood deaths have decreased, there has been a troubling increase in deaths among young adults, those aged 15 to 49 – mainly because of violence and HIV/AIDS. And while malnutrition – including starvation – used to be the leading risk factor for death worldwide, now it’s the opposite that’s the big threat: poor diets and physical inactivity. In fact, dietary risk factors and physical inactivity now account for a whopping 10 percent of the world’s health burden, as excess weight and high blood sugar continue to soar.

We are living longer, but some of those “extra” years are years of pain, sickness, immobility, depression, anxiety and other forms of poor health.

As some health problems have lessened worldwide between the new study, called the Global Burden of Disease Study 2010 and its predecessor in 1990, others have soared, chief among them lower back pain and road accidents. The latest research, funded by the Bill and Melinda Gates Foundation, was a massive endeavor with 486 authors from 302 institutions and more than 30,000 survey participants in more than 100 countries. It resulted in seven scientific papers being published together.

In statistical terms, what’s happening is that although life expectancy from birth is still increasing all around the world, what might be called the “healthspan” is not keeping pace. In other words, we are living longer, but some of those “extra” years are years of pain, sickness, immobility, depression, anxiety and other forms of poor health. Continue reading

11 New Technologies To Manage Chronic Illness And Save Money


Driving is not often linked to health. On the contrary, our affinity to motor travel has helped us become fat, lazy and accident-prone (at least while we’re texting on the road).

But a slew of emerging technologies, including “in-car” telemedicine may help. For instance, a wireless glucose monitor might prompt a diabetic patient that he’s borderline hypoglycemic and urge him to pull over. Or another system might warn an asthmatic that he’s driving through a known asthma-attack-inducing region and automatically switches the HVAC system to recirculate and close the windows.

Eleven of these new technologies are profiled in a new paper that suggests these and other novel apps might offer effective, more affordable ways to treat and manage chronic conditions, like cardiovascular disease, asthma and diabetes, in underserved populations.

Getting to Value: Eleven Chronic Disease Technologies to Watch, a report by the nonprofit health policy institute, NEHI, offers detailed profiles of the new systems, including Extended Care eVisits, Home Telehealth, Tele-Stroke Care, Medication Adherence Tools and social media tools that, for instance, offer “simple daily challenges or “micro-actions” and incentives to lose weight or exercise with a supportive community focused on similar goals. Continue reading

House Calls: Caring For A Very Sick Man, And An Incurable Young Woman

Part I:

When was the last time a doctor, nurse or any other medical provider spent more than an hour taking care of you — at your own home?

Well, it happened this week in Revere.

At 10 am on Monday, nurse practitioner Therese Willette stood outside a neat brick apartment complex on Lantern Road. She and a social worker named Jen Pinto were paying a visit to Rolando Guillama, an 81-year-old Cuban-born man who takes 18 prescription medicines to treat a laundry list of complicated conditions. He’s had a heart attack and bladder cancer, undergone aortic valve replacement, coronary artery bypass surgery and abdominal aortic aneurysm repair. He suffers from hypertension, chronic obstructive pulmonary disease, hyperlipidemia, depression, diverticulosis, peripheral vascular disease, a peptic ulcer, carotid artery stenosis, diastolic heart dysfunction, chronic kidney disease, and anemia.

“I had a lousy day yesterday, and a bad night,” wheezes Mr. Guillama, above the hum of his oxygen machine. His belly and ankles are swollen, his face is puffy. He looks exhausted. “When his feet were so swollen last night,” his wife, Joanne, chimes in, his body “started jumping.”

(Video with permission from Rolando and Joanne Guillama)

I tagged along to the Guillama home trying get a feel for the medical side of Commonwealth Care Alliance, the Boston nonprofit I profiled earlier this month, as part of our series on unique health care delivery programs. Continue reading

Field Test: Does Bob Master Hold The Secret To Better Health Care?

As part of our ongoing coverage of health reform and the cost of care, CommonHealth will periodically investigate novel approaches to delivering high quality, affordable medical care. We begin the series with a look at Bob Master’s Commonwealth Care Alliance, a nonprofit that has reduced the hospitalization rate of its chronically ill, elderly patients by nearly half since the first enrollee signed on in 2004.

Bob Master, CEO, Commonwealth Care Alliance, a unique health care delivery organization

Step into the downtown Boston office of Commonwealth Care Alliance, and the first thing that hits you are the walls — they’re a screaming, deliciously bright shade of orange — not the typical palette for a health care business. But that’s the point.

As CEO of this unorthdox hybrid — part health care provider, part HMO, part payer — Dr. Bob Master must take on multiple roles. “We have to play the insurance game,” he says. “But that’s not our primary role.”

Reinventing Primary Care

Dr. Master’s ultimate role has been to re-imagine health care delivery. Commonwealth Care front-loads primary care and supports physicians in its network with a dedicated team of nurse practitioners, mental health and behavioral specialists, geriatric social workers and “every medical and surgical specialist known to man.”

The organization is essentially a full-service provider of medical care and social support for chronically sick, elderly and sometimes disabled people on Medicare, Medicaid, or both. From the moment a patient signs on, he or she has access — 24 hours a day, 7 days a week — to a nurse practitioner who is armed with up-to-date electronic medical records and has the authority to call in other specialists as needed. Patients can choose from 25 primary care sites around the state, and for the homebound, house calls are also part of the plan. Continue reading