Here’s My Battle…What’s Yours?

“Be kind, for everyone you meet is fighting a hard battle.” -Plato

I’d like to start with a disclaimer: I am not a dietician, a doctor, or a therapist, and I do not have the expertise or authority to provide professional advice on the following subject.  I do, however, have personal experience, and in ways, I feel that for so many others confronting similar issues, these personal experiences hold equal to professional training.

I had an eating disorder.  More specifically, I had several.  For 10 years of my life, I cycled through various types of disordered eating methods [Side Rant: technically I am classified as Other Specified Feeding or Eating Disorder (OSFED) because I don’t meet the very specific criteria of eating disorder categories; however, telling people I have an ‘other specified feeding disorder’ makes me feel like an animal that just has a difficult time controlling what she eats.  It’s a completely invalidating name for a condition, in my opinion, which is why it is simply easier for me to say I had an eating disorder].  My battle with food started in high school when I would restrict my calories and eat as little as possible.  In college, I gained the “freshmen 15” and then some, but also discovered I had the ability to make myself throw up.  That led to binging and purging, sometimes (more…)

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Underlying Cultural Beliefs that Affect Health Care

Certainly, there are many factors that influence one’s health. However, it seems to depend partly on one’s culture and how that culture influences an individual’s view of his or her body. For instance, our society appears to be obsessed with dieting, losing weight, and having a body image that is thin, thin, thin. The disturbances we see in our relationships to food, the body, and health seem to arise from beliefs that are embedded in Western culture.

In the mid to late 1990’s, a study was done in Fiji researching how the presence of Western media has made its impact on the South Pacific culture. The study observed Fijian adolescent girls dramatically change their attitude toward their bodies and their sense of self after television was introduced. (more…)

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Three Little Words

Hope Ditto

So, I’m a few weeks late for Rare Disease Day (which was on February 28th) this year. That’s because on February 28th, I didn’t realize the condition that I’d had since birth, and long ago learned to live with and embrace, was a rare disease. Or even a disease at all. And while finally being able to put a name and a clinical explanation to my situation doesn’t stand to change anything for me physically, having a label with which to identify has started me on a journey I could never have imagined. And it’s only just begun.

Let me back up. A quarter-century ago, I was born. My mother had a healthy pregnancy, and my parents had never been given any reason to believe that I wouldn’t be a perfect, “ten tiny fingers and ten tiny toes” arrival. Fast forward through several hours (30, to be exact) of labor, and finally I made my way into the world. Call me biased, but I’m sure my parents thought I was a perfect little bundle of joy. And I was healthy in every discernible way – only, unlike most babies, I didn’t have all of the requisite “ten tiny fingers and toes.” (more…)

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Food: The Ultimate Health Care Disruptor

(top) Dr. Elizabeth Klodas,
(bottom) Barb Birr

It seems the farther we progress with medical treatment and technology, the faster we abandon addressing the root causes of disease. This is especially true in the case of heart disease, the number one killer and disabler of Americans.

As a health care system, we have certainly become exceptionally good at prescribing statins, treating hypertension, and putting in stents and pacemakers.  But we do all this while failing to effectively address the underlying fundamental root cause of cardiovascular disease – poor nutrition.

Of the seven modifiable risk factors for heart disease – smoking, inactivity, high cholesterol, high blood pressure, blood sugar abnormalities, excess weight, poor diet – five are nutrition related.  And simply putting people on medications to normalize their cholesterol or blood pressure readings without fully addressing what they eat is therefore not a cure – it is only a masking of risk.  Paradoxically, this masking actually enables poor dietary patterns, perpetuating the underlying stimulus, creating a vicious cycle. (more…)

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Short in the Cord: A Retrospective on Living and Coping with Multiple Sclerosis

PicturejwToday, Joan Wheeler shares with us an excerpt from her collection of essays titled ” A Short in the Cord: A Retrospective on Living and Coping with Multiple Sclerosis.” Described in her own words, 

“This story describes my own experiences with Relapsing-Remitting Multiple Sclerosis, which is a ‘type’ of MS where the patient experiences an episode (aka attack, flare-up, exacerbation, or relapse) of some neurological symptom that is followed by a complete or partial recovery period, or remission.  Each day is different – no, actually, each hour is different.  My disease is as unpredictable as that lamp in my apartment living room years ago.  Because of the unpredictability and the variances in symptoms, it is very hard to explain to other people what I’m going through or why sometimes I’m suddenly unable to do things that I could do earlier.  I need to share my experiences, to explain, to come to terms, to mourn, to heal.  This is part of my therapy. ” (more…)

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Remember Your Heart Health

Hey you, Disruptor! February is American Heart Month.

We know that February is coming to a close, but heart health is something that should be observed all year.

Heart disease is the No. 1 killer of U.S. women, yet few know about the symptoms of heart disease.

Check out the Disruptive Women video below detailing facts and resources for heart health. Share it  to help spread awareness of this silent killer.

(more…)


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STORIES FROM THE HEART: She Overcame a Stroke; Her Sister Didn’t, Stoking Her Passion to Educate Others

Enduring what she thought was a crushing migraine, Bethany Calley left her job at the sheriff’s department and headed to the store for some medicine. She was making her way across a parking lot when “it felt like my head exploded.”

“It felt like thick fluid was running through my head,” she said. “It felt like I had four pipes running through my head; two forward and two backward.”

She couldn’t see or speak. She didn’t know if anyone was around. Unsure how to make it back to her car, she just started walking until she bumped into it. Once inside, she managed to pull out her BlackBerry and start typing. She must have hit someone on her contact list because she could hear someone calling her name. They were screaming her name over and over. Bethany kept typing.

Finally, help arrived. (more…)


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Normal Care Hours Don’t Work for Workers With Chronic Conditions

jessie-gruman picIt looks like an airport lounge without the rolling suitcases. There are about 20 of us cancer survivor-types fiddling with our phones or reading the newspaper. A few of us are sipping delicious contrast fluid in preparation for a scan, but most of us are waiting to meet with our oncologists for follow-up or monitoring visits. All of us are between the ages of 20 and 70 and all of us are dressed for success – or at least for our jobs.

What’s wrong with this picture? Why are employed adults spending a busy Wednesday morning waiting (and waiting) to visit our oncologists when we should be working?

We are there because our clinicians and all the services of this comprehensive cancer center operate only during standard business hours, which is also when we are usually working. This means that something’s gotta give if the growing number of us cancer survivors are to attend to the chronic conditions caused by our treatment and be monitored for recurrences. In the meantime, what’s gotta give is us, our employers and our paychecks. (more…)


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National Black HIV/AIDS Awareness Day: Educate, Test, Involve, Treat

IMG_20140206_180005763I was five years old in 1990, when HIV-AIDS was entering the national spotlight, sparking awareness and fear. We were educated in elementary school about the transmission of the virus; I remember a lengthy conversation [ more so my parents talking at me] about why it was important not to touch someone with an open wound. In years to follow, pivotal cultural figures like Magic Johnson would come out announcing their status,  further proving that the disease could effect anyone.

First appearing in the early 1980s, HIV-AIDS quickly became a national concern.  And today,  while advances in the treatment of HIV-AIDS has allowed those infected to live longer, there are serious disparities in the access to health care services for racial and ethnic minorities.

According to the CDC, African Americans have the highest rates of HIV-AIDS when compared to all other racial/ethnic groups in the United States, accounting for a higher proportion of HIV infections at all stages of disease—from new infections to deaths. And while African Americans represent only 12% of the population, they  accounted for  44% of new HIV infections in 2010.  Without education, intervention, and treatment, it is estimated that  1 in 16 black men and 1 in 32 black women will be infected with HIV in their lifetime. (more…)

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Killing Us: Just Say No Failed in the 80s and Fails Us Again

Janice Lynch Schuster

A front-page Washington Post article about a 16-year old’s heroin overdose caught my attention Sunday morning as I read through papers I had missed. The story is becoming all-too common throughout the Washington, D.C.-Baltimore, MD-Annapolis, MD triangle, where I live.

Who can say what tempted a young woman—a girl, really– to allow another young adult to inject her with heroin? By all accounts, the girl had not tried drugs before. When she lost consciousness, her “friends” did not respond as if it were an emergency; instead, afraid of the consequences they might face, they ditched her in shrubs and covered her with window screens.  Police found her body a few days later.  (more…)

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Kelly’s Cervical Cancer Journey

post signatureBelow are experts from Kelly, author and creator of the blog My Cervical Cancer Journey. In her blog, she details her fight with cervical cancer from 2010 to the present.  

My name is Kelly and I was diagnosed with cervical cancer stage 2 in May 2010.  I had no idea what I was in for!  You hear the word cancer and you have two choices:  curl up in a ball or you fight.  I am not a doctor but want to share my story from the patient point of view to help others.

I was 41 years old at the time of the diagnoses.  I am a single mother of triplets.  I was scared.  My symptoms were constant bleeding.  During the same time, I needed a left knee replacement.  I decided to do the knee replacement first so that I could get walking without pain.  Then on May 19th, 2010, I went in for a hysterectomy.  I went home the next day.  Around 5 pm, my gynecologist called and broke the news.  I broke.  I broke for my children, my Mom and myself. (more…)

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In Memory of Sam Berns

Photo Credit: Washington Post

Today, our friend, Disruptive Woman, President and CEO of the Genetic Alliance, Sherry Terry pens a tribute  letter to Sam Berns. Please read her moving words below.

Dear Friends,

First and foremost, we in this community are a family, and support and love each other. And so, I sadly write to let you know that Sam Berns, son of Leslie Gordon and Scott Berns, nephew of Audrey Gordon, passed away on Friday night. (more…)

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Health Information Technology: Closing the Gap or Exacerbating Health Disparities in Underserved Communities?

Megan DouglasHealth disparities are avoidable inequalities in health between two groups of people. They are often associated with social, economic, and/or environmental disadvantage. In the United States, health disparities are persistent, especially in poor, rural, and minority communities. Maternal and child health is a prime example, with infant mortality rates experienced by African Americans in the U.S. more than double those experienced by Caucasians. The Transdisciplinary Collaborative Center (TCC) for Health Disparities Research at the Morehouse School of Medicine (MSM) in Atlanta, Georgia, has been funded by the National Institute on Minority Health and Health Disparities (NIMHD) to tackle health disparities through four distinct initiatives using a collaborative approach and including community participation, with the ultimate goal of informing and influencing policy on these issues. (more…)

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How Social Media Helped Me Through My Breast Cancer Treatment

MandiSocial 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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Shehecheyanu: Who has given us life?

 

vhn1The Shehecheyanu blessing (Hebrew: שהחינו‎, “Who has given us life”) is a common Jewish prayer said to celebrate special occasions. It is said to be thankful for new and unusual experiences.[1] The blessing has been recited by Jews for nearly 2000 years. It comes from the Talmud. — from Wikiped

During the six months in between my diagnosis in September 2009 and the day I got re-staged after my mastectomies in March 2010, I pondered my mortality on an almost daily basis. My oncologist was never less than honest with me, so I knew the facts on the ground. (more…)

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