Introduction to Special Series on Stroke: World Stroke Day, Women & Stroke, and the Stroke Comeback Center

Stephanie Mensh

Today, Disruptive Women in Health Care begins a special week-long series to raise awareness of stroke in recognition of World Stroke Day, providing opinion and actionable information, and joining in the celebration of 10 successful years of the Stroke Comeback Center in Vienna, VA.

October 29, 2014 is World Stroke Day and the launch of a 2-year, world-wide campaign, I am woman: Stroke affects me, sponsored by the World Stroke Organization (WSO) and supported by national organizations like the American Stroke Association (ASA).  Women have a higher risk of stroke than men, a higher mortality rate from stroke than men, have worse outcomes from stroke than men, and often receive less care than men, despite responding equally well to care, according to the WSO.  Women are the predominant caregivers, often resulting in health issues that then may increase their own risk of stroke.

Each year, 15 million people worldwide suffer a stroke. In the U.S., about 790,000 Americans suffer a new or recurrent stroke. Stroke is the 4th leading cause of death, and a leading cause of disability.  The ASA estimated that Americans will pay about $73.7 billion in 2010 for stroke-related medical costs and disability. (more…)

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Passport Stamped for the Land of Pain: Learning to Live in a Foreign Land

Janice Lynch Schuster

The following post originally ran on the Pain Action Alliance to Implement a National Strategy’s (PAINS) website.

For many years, my passport was stamped in the land of the well, but a poor response to oral surgery in 2013 cancelled that document, leaving me in the land of the sick, the suffering, the other. While I was a well-one, I’d hear stories from that other country—and listen as best I could when others told tales of their visits– but I did not know what it truly meant to live there all the time.

Learning to live in another country is hard work. There are unfamiliar customs to understand, a language to learn, awkward situations, foods and beds and places that do not quite feel like home. The currency may not convert.

Once you become a chronic pain patient, as I have, you discover how much of your life is no longer your own. (more…)

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Preventing Prescription Drug Abuse: Are You Doing Your Part?

Terri Prof Headshot 0412Do you know what your teen is up to when you’re not looking?  What about your spouse, your parents and your friends?  Hopefully they aren’t rummaging through your medicine cabinet to find something they can take to get high. Many of us would never think to use a prescription drug for something other than its intended purpose, or to take something that wasn’t prescribed for us and absolutely necessary.

Unfortunately, there are a lot of other people who not only consider this, but act on the impulse to misuse and abuse prescription drugs.  Sometimes they work the system and see a doctor, or multiple doctors, and get the prescription for themselves, but often, they are looking through your medicine cabinet when you’re in the other room, getting them for free from friends or buying them online or from dealers.

Prescription drug abuse is a growing problem; according to the Centers for Disease Control it is an epidemic.  Just like any addiction, it can ultimately ruin or even end someone’s life.  (more…)

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Consumer Centricity: Changing what we know about Health Care

Cyndy Nayer

Consumer Centricity is about to change everything we know about health care. It is creating a health investment community where transparency is king and social exchange reinforces value.

This is the rise of the consumer health investment marketplace. Technology is improving the conversations and exchange of data—social media (providing peer-to-peer information and counseling), quantifying technology (providing measures of health to the person without the need for clinical reporting), and financial advice (tune in to some of the social media pages for patient and cost advocacy). We are witnessing the handoff of health care control to the consumer who does, in fact, have a bigger financial stake than ever before, but who also can leverage data for answers to personal questions and priorities.

At last the consumer is developing a voice in health care, identifying the priorities of lifelong health that he or she values. There are 4 reasons that consumers are building noise on their preference in health care:

  1. Enormous increases in consumer-driven health plans with high deductibles. (more…)


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Breast Cancer Prevention: My “Mommy Musts”

Amber Coleman-MortleyI spend a large portion of my time caring for, looking after, and maintaining the health and wellbeing of others.  Amidst all of the scheduling of my work life and the kids’ respective social lives, the hours of my day quickly evaporate into vague memories of daily routine. Not once do I stop and think about myself, my health and often my own needs.  And why should I?  Like all “good” mothers, my needs come second to theirs.

Recently, my child randomly said to me, “Mom I can’t imagine our life without you”. That gave me pause.  I thought about it and felt the same. Who would do the cooking, the cleaning and all the neurotic yelling about clothes and toys on the floor? That sentence made me think of my mortality in a deeper way. To these little people, I mean something.  Do I respect that?

This moment took me back to when my own mother informed me (a young adult at the time) that she had found a lump and was going in to get it checked.  (more…)

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The Art of Survivoring

janeblackA week from today I will be the keynote presenter at the “Ladies Night Out – Give Cancer the Boot” annual gala for the Springfield Regional Cancer Center (SRCC).  I am flattered and daunted by this opportunity to share my thoughts with an audience of 400 patients, survivors and their champions.  The date of the event falls on the 6th anniversary of my mastectomy – how fortunate I am to celebrate with kindred spirits!

I will open with this claim:  The richest and most profound experiences happen when what we believe to be real and true about ourselves is turned upside down.  (If you’ve seen Brene Brown’s TED talks you know that this is a precious part of the transition process.)

Then I will chime in about my driving force – to attract and to radiate positive energy.  Period.  This is my metric for success. (more…)

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How Social Media Helped Me Through My Breast Cancer Treatment

MandiDisruptive Women previously ran this post in November 2013, but given its message felt it was worth running again during our breast cancer awareness series.

Social media opened a world of connections for me when I was a patient undergoing breast cancer treatment. It became a mechanism where I could reach out to say “hi,” to console, or just to yell out into the world when I was angry.

I actually started blogging about my breast cancer treatment because my aunt kept a blog through the course of her treatment (she was usually a few months behind on updating, so I vowed to be a little timelier when it came to writing posts). It was a great method for updating my really large extended family and I found that writing things down that were emotional for me, helped me process the emotions. (more…)

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We Are All Survivors, If Only for a While

Janice Lynch Schuster

Those of us still lucky enough to call this Earth home have all survived something that 50 or 100 years ago would have killed us: childbirth, for instance, or workplace accidents, infections and diseases. And most of us have survived any number of challenges and losses: deaths, illnesses, jobs, loves. Many of the relationships and activities that we love do, at some time, come to an end. Some of us will survive because we have endured great harm and abuse.

When we see and name ourselves as survivors, we feel that we are somehow still masters—that challenges formed us, but did not claim or shape us. Survivorship reflects our most admirable qualities: strengths and resilience, resourcefulness and ability to stand and stay strong.

Every October, while we celebrate another month of raising awareness of breast cancer (as pink festoons everything from pickle jars to football gloves, until we yearn to shrug it off or dye it black) we rejoice with those who have endured this disease and emerged, still standing and alive. (more…)

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Finding My Purpose through My Wife’s Breast Cancer

samIn the spring of 2000 Susan, my wife then of 33 years (now of 48), was diagnosed with breast cancer.  It all started with her annual check-up and her internist saying she felt something “funny” in Susan’s right breast.  She suggested Susan see a breast surgeon.

While I was surprised, I wasn’t alarmed.  It was going to be Susan’s fourth breast biopsy.  Unlike the three previous ones, this one was done as an out-patient procedure in one of the then relatively new surgical centers now found in shopping centers everywhere.  No frozen section this time, just wait to hear what the surgeon found.

He literally skipped into the recovery room to tell us that “it was just scar tissue from the old biopsy site.”  While we still needed to get a lab report, there was no tumor and we shouldn’t worry because it was just old scar tissue, he was “sure of it.”   The call came three days later that the surgeon wanted to meet with Susan and me as soon as possible. (more…)

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Misleading Information about Breast Cancer Screening

kopansThis week we will be running a series on breast cancer in honor of Breast Cancer Awareness Month.

It is unusual to bring concerns about medical publications to the public, but in this case the health and the lives of women are at stake.  It is difficult to criticize one of the most respected medical journals in the world, but when it comes to breast cancer screening, the New England Journal of Medicine (NEJM) appears to have taken an unprecedented, undeclared position against mammography screening and has published a number of papers that have been misleading and not supported by actual facts.  This has created a great deal of confusion and doubt among women and physicians.  Adding to the problem is that the NEJM editors have refused to publish letters of concern about misinformation, and will not even meet with leading experts to discuss these important issues.

In 2010 the NEJM published a paper that claimed mammography screening in Norway had had little impact on breast cancer deaths.  The study relied on the premise  that, very few women were being screened before the national screening program began.  (more…)

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Mental Health Care Game-Changers: Technology and Social Networks

Jen Hyatt

Jen Hyatt

The world of health care breeds innovative thinkers, radicals, people who see and act to ‘make things better.’ So why is health care so often not a place of change, but a place of stasis?

Change can be disorientating, and large systems can suffer from barriers to innovations that are hard to break through. And while, with resolve and vision, these can be tackled it is much harder to bring about change that requires a shift in power. This sort of change tends to create fear, often legitimate, that something will have to be lost or given up to enable a change to become embedded. But, by using technology and social networks such changes in healthcare can be realized.

(more…)

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Free the Data Announces New Partnership with Rep.Wasserman Schultz

Sharon Terry

FTD_logo3WASHINGTON, DC (October 8, 2014)—Free the Data, a national coalition of organizations dedicated to freeing genetic information, announced that U.S. Rep. Debbie Wasserman Schultz (FL-23) was named its Honorary Chair.

“The time for hoarding data as a commodity is over,” said Sharon Terry, President and CEO of Genetic Alliance, the nonprofit health advocacy organization that coordinates Free the Data. “The Coalition is thrilled to have a powerful partnership with Congresswoman Wasserman Schultz. In Breast Cancer Awareness Month, we are confident that the Congresswoman adds strength and momentum to the Free the Data movement, particularly as we work to free data associated with breast and ovarian cancer!” (more…)

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Teaching Kids How To Deal With Injuries

Amber Coleman-MortleyRecently our 1st grader had a really bad fall.  The fall was so bad she looked like an MMA fighter.  In many ways I wish she were fighting because the story would be a lot more interesting. But alas this was your typical young child meets concrete experience where the score was concrete 100, child 0.  I’m not certain what happened but as I turned to face her shrill scream I saw her face was scraped from top to bottom, permanent tooth chipped and pride destroyed. My heart sank when I saw her, I thought “anything else”. We’d already dump more than $1000 into her mouth from accidents with baby teeth and I thought the dental nightmare had ended with the arrival of her permanent teeth.

It was as though I didn’t react. I flew right into action. I grabbed the med kit from the car and raced back into her father’s house.  (more…)

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The Launch of Disruptive Women UK

I recently received an offer I couldn’t refuse from one of most innovative, forward thinking women on the UK health scene; Jen Hyatt, CEO and founder of BigWhiteWall. The offer was an invitation to a very exciting event; the launch of the UK chapter of a movement called “Disruptive Women In Health”.

And, as a card carrying health activist, how could I say no to a title like that?

After all my journey has been disrupted by my health and I have spent years channelling this into disrupting some of the more traditional health services. I have done this both with my voice, which has become louder with the support of my peers and organisations like YoungMinds, and with technology like WellHappy, which I founded, and BuddyApp who I work for now. (more…)

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An Interview with Kimberly Baxter, Director of the Iowa Accountability Program

baxter

Kimberly Baxter

Domestic violence can strike both rural and urban communities, impacting over 6,000 Iowans each year.  And while African Americans only make up approximately 3.2% of the state’s population, the 2011 preliminary Iowa Uniform Crime Report states that African Americans comprise 15% of domestic violence victims and 24% of domestic violence offenders.   In addition, 18% of cases in which the victim was also the offender involved African American victims.

The Iowa Accountability Program (IAP) is doing something about it.  The program—a grant project funded through the U.S. Department of Justice, Office on Violence Against Women—aims to improve the judicial system’s response to domestic violence in Iowa.  Recently, the IAP launched a Judicial Training Institute and the Domestic Violence Court pilot program in Black Hawk County.   The IAP legal fellow, Julianne Toia, recently sat down with Kimberly Baxter—Director of the Iowa Accountability Program—to discuss these newly implemented programs and how they will impact the handling of domestic violence incidents in the State of Iowa. (more…)

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