24 December 2014

Hurt Society: Planes, Trains & Automobiles — ePatient Travel Edition

My relationship with planes has changed over the years. I remember being little enough to curl up like a cat in my single seat and eventually having to stretch out to put my head in my mother's lap.

Trains have been much more of a novelty. As industry routes and freight trains once loaded with logs and coal have given way to cute touristy things and railway beds reclaimed as greenways, we have lost much of our connection to this great American mechanization.

As an only child, I always had the backseat to myself whenever we took family road trips, which may well be what lead to my penchant for naps, as a set of headphones and a pillow did much to block out the crackling AM sports radio to which my father always listened.

Regardless of the method, it's always held that so long as I have a window and music, I can travel for hours.

When I began flying on a regular basis for my advocacy work, I made one other small investment — ear plugs. I had no idea the difference they would make. Like my headphones, the ear plugs served to block things out. Crying babies, loud talkers, engine noise, and ill-timed pilot announcements ceased to exist. Suddenly I was so much less exhausted after my cross-country flights. Many of my days are spent working in near total silence, save for the cats thundering past, having received random signals from the feline planet and a collection of clock ticks and chimes. An airplane's constant droning roar was too much. It wore me down. It wore me out.

The downside to ear plugs is that others generally can not tell when one is wearing them, so an earnest attempt at conversation can lead to being misconstrued as rude. Note — it's not that I'm not paying attention to you; it's that I very purposefully have chosen not to hear you.

Given the holidays, many patients (and others) have travel slated. Seeing family and friends may have great sentimental appeal, but its reality is much more complex. If one has gotten a job, lost a job, gained weight, lost weight, dumped a lover or found one, bought a house or sold one, had surgery or opted out of one, started a new medication or stopped an old one; or any other combination that basically translates to living, my own advice about going to see those aforementioned friends and family involves deep breathing, happy place visualization, lots of tongue biting, and comfortable shoes to enable nice long walks. As the great Mick Jagger once said, we can't always get what we want, but we may well get what we need — a new perspective.

With that in mind come the following posts:

What can each of us do to help when we see someone who is having a tough time, even if they don’t look sick?
Susannah Fox

Make life easier for yourself when you travel by accepting help that is available, strategizing before you leave, asking for reasonable accommodations for problems that arise, and trying to keep the weight of your luggage down. Also contains a few specific ideas to make travel less trouble.

The Transportation Security Administration can be friendly, provided one is willing to jump through certain hoops. 
Matthew Charron

All disabilities are not visible — but one mom to a rare disease patient explains that discrimination against invisible disabilities can be entirely less than subtle.
Melissa Hogan

Plan ahead to avoid common travel problems such as sleepiness and stiffness.
Mayo Clinic

Speaking of sleepiness and stiffness... here are some tips about sleeping in an airport.
Outside Online

And when it comes to flying, take this quiz to evaluate your savviness.
Outside Online

18 November 2014

Hurt Society Blog Carnival Call: ePatient Travel Edition

Fellow advocate HurtBlogger and I have been traveling a lot lately — cross country flights, multiple hotel room nights, long drives, public transportation, business and pleasure. All the travel takes its toll. We aren't always as rested as we should be, perhaps have always eaten the best, have logged too many steps, or carried too many things. But our advocacy work is important enough that we are willing to make certain sacrifices in order to represent.

This week she and I have met in San Francisco for a rare day of rest and relaxation prior to a Medicine X planning session. Although she lives in Southern California and I in Western North Carolina, our meeting comes on the heels of trip to Boston and Philly — her for the American College of Rheumatology and me for the American Society of Nephrology. Catching up this morning over breakfast, we discussed our travels. We didn't focus on sights we'd seen or foods we'd eaten. Frankly those kinds of things are rather low on the list compared to networking and learning.

Instead we lamented the physical demands of traveling and dealing with an industry — though often called "hospitality" — that is less than patient-friendly. I've heard more stories in the past two years about patients with invisible disabilities being disbelieved and harassed while seeking needed accommodations such as extra time to board a flight, a room with a refrigerator for medication and nutrition or assistance carrying luggage. Many such things can be had by paying more money, but as patients know — problems most easily solved by throwing money at them are the ones that present some of our greatest challenges.

How might we better address these challenges? As individual advocates, we and many others have voiced our concerns and pointed out problems — but that doesn't mean that we've been successful in making it easier for others. So we're launching an offensive. In preparation for the holidays' busy travel period, HurtBlogger and I are joining forces to bring you the Hurt Society Blog Carnival ePatient Travel Edition that will pull together posts highlighting what it's like to travel as a patient.

We want to hear from you. This isn't just about venting — it's about calling out bad policies and proposing solutions; it's about recognizing those who are getting it right and holding them up as shining examples; it's about sharing tips to help others survive whether that's enrolling in TSA's Pre-Check program or finding hotels with free breakfasts.

Submit your post to us for review and possible inclusion by noon (Pacific) on Saturday, Nov. 21. Be sure to format your submission with the following:

Post Title:
Blog Title:
Twitter Handle:
1-3 Sentence Post Summary: 

Note: perhaps you are not interested in writing a post of your own but know of one that has provided you with valuable tips. Send it to us!

Look for the Hurt Society Blog Carnival ePatient Travel Edition to post this holiday season. 

19 September 2014

And In The Wilderness A Clearing Emerged

In addition to my work as an advocate, my actual "job" has been as a reporter and editor. I've been in the field professionally since I was 17 (though one could count running the school yearbook and starting a literary magazine as my initial forays). My first employment outside a horse stable was in an university's public relations office. I worked four summers there moving up from the mail room and putting together basic press releases to writing full articles and contracting for assignment work while at college. I earned a degree in journalism with an outside concentration in political science at UNC-Chapel Hill. While there I worked as a writer, desk editor and managing editor of The Daily Tar Heel; wrote for and edited a literary magazine; volunteered for Journalists United to Maximize Potential, a student-run organization that taught middle school students how to produce a newspaper; interned in public relations for the Morehead Planetarium; and interned in public relations and artist promotions for a record label.

After college I went to work for a twice-weekly paper in South Carolina, which was a formative experience that I was happy to leave nine months later. I got two cats out of it and a love for police scanners. I took a job as a reporter near home in the mountains of North Carolina on Sept. 23, 2003. I rose from reporter to special sections editor for all our contract publications. When our company acquired a nationally-distributed slick-glossy magazine, I became assistant editor and then managing editor in 2010. (And yes there was time spent teaching and being a licensing test proctor in there too...) Since then I've reshaped the magazine, grown its content and overall vision, and — as the years went by and my advocacy work took off, I even had opportunities to involve some of my health contacts in writing pieces for it.

However, my passions changed the more involved I became in advocacy. I saw a greater ability to make a more immediate impact by connecting with patients, providers and industry leaders. Advocacy work made all my personal illness make sense. Illness was a strange gift of burden that gave me unique knowledge and experiences. To communicate about illness was a challenge with deep personal impacts. I was afforded opportunities to grow in this regard and turn my knowledge and experiences into solutions for the healthcare community at large. And I suppose one could say that I fell in love with doing, with getting elbow deep instead of being an objective observer.

Thus I found myself in the position of being all in — with the caveat that I was not yet all out of my job as an editor. For much of 2014, I juggled as many serving plates as for a dinner party of 108. We began planning to revamp the magazine to feature more web content, ad sales experienced an uptick, writers came and went (sometimes not by their choice), and the culture of innovation I loved so much in my advocacy work influenced me to keep editorial offerings fresh. By summer, I was named Coordinator of ePatient Programs for Stanford's Medicine X and learned just how little sleep I really needed as the conference crept closer and collided with press deadlines. I've always worked well under pressure, but this time the pressure also had a way of crystalizing my priorities.

I was supposed to spend the week after MedX connecting with nature. Instead I was gnashing my teeth. Out in the wilds of Yosemite, I only occasionally received a cell signal, which was sufficient for texting at best. Online access could be had only late at night or early in the morning. In the dark hours with my phone held just so, spotty 3G connected me to all those also suffering the #MedXHangover, their blog posts, their continuing conversations. And I felt so very left out and alone.

Then an email arrived from my publisher. We needed to talk about deadlines. Or at least he needed to talk about deadlines. I did not. I needed to deconstruct, discuss and disseminate every detail of my thoughts about patient engagement, clinical trials, online communities, mental health, self disclosure, relationship building, innovation, collaboration — everything that fostered in me the inspiration to continue advocating for change. And thus the decision was made. I replied to my publisher that I no longer was the right person for the job.

We traded emails for two days, and I did not tell my husband — who works for the same company — about any of it. The last night of our trip, we were well into working our way through a water-front bar's microbrew list when he demanded answers.

Him: "Is my kitty okay?"
Me: "What?" 
Him: "Is my kitty okay?"
Me: "Your kidney?"
Him: "Is Nelson alive?"
Me: "WHAT?"
Him: "Is my cat Nelson still alive?"
Me: "Um... yes? What? Why do you think Nelson is not alive?"
Him: "You've been kind of dodgy for a couple of days. Is Nelson dead and you haven't told me?"
Me: (brow furrowed) "What kind of person do you think I am? Geez. YES. Your kitty is FINE. I've just been thinking about making a major career change."
Him: "Oh. Okay."

That night he was happy and supportive. In the morning, when he had sobered up, he was terrified. 

Me: "I knew I shouldn't have told you until I had a plan!"
Him: (consternated) "What IS your plan?"
Me: "Give me a few days."
Him: (incoherent grumbling)

It took another week for things to truly begin to come together. I lined up enough contract work to cover the basics. A side project offered the promise of a business plan. A start-up company scheduled a meeting. And my publisher and I went out to lunch. Four days before my 11-year anniversary with the company, I negotiated my exit strategy. 

I will remain at the magazine's helm for one more edition, assist in hiring a replacement, train said replacement during 2015's first edition and then transition to a contributing editor role. The arrangement frees me to do what I do best and enjoy most — writing, contributing to the creative vision, editing and developing web and social media content — while eliminating managerial duties, thus giving me more time and flexibility to be an advocate and independent consultant. Already I am committed to speaking in Philadelphia and Australia and consulting locally, in Philly, California and Washington, D.C. by April. I also will pursue opportunities for a writer's residency with the intent of working on that book so many have been prodding me to do. 

This pivot, this new plan for the future would not be feasible without years of encouragement and support from friends, family and mentors — though really those categories greatly overlap one another. I thank all of those who have been part of my journey thus far, and I do sincerely hope that they will continue along with me as I hack a new path. Yet I caution — the only following each person must do is to follow the course his or her heart knows to be true. 

24 August 2014

Help Shape the Mental Health Conversation at Medicine X

Mental health too seldom is discussed. There remains a stigma associated with with conditions that impact the brain. Why? The brain has no better protection from illness than the heart or the lungs or the skin, yet we hold it to an entirely different standard. This antiquated philosophy must change—and only will change when we bring conversations about mental health to the forefront.

I am an advisor to Medicine X, a healthcare and emerging technology conference held at Stanford University each September. During and after Medicine X 2013, attendees and those engaging in the conference via the livestream and Twitter feed called for greater inclusion of mental health issues—and we listened. At Medicine X 2014, mental health and psychology weave their way in and out of various presentations. Daniel Siegel, MD will give a keynote speech and lead a 90-minute Master Class on "Compassion, Connection and Engagement: How Health Arises from our Mind, Body, and Relationships." Dustin DiTommaso of MadPow will take a look at the psychology of motivation and how to close the gap between people's intentions and their actions. Allison Darcy presents her work to develop and pilot a smartphone app for patients with eating disorders. Four CEO's will talk about building companies to bring emerging technology to mental health; and psychologist Dr. Ann Becker-Schutte leads a panel discussion about mental health as a turning point for whole person health.

It would be remiss of me to talk about bringing mental health into the light without being open about my own. As a freshman in college, I was diagnosed with depression and anxiety. Changes in environment and my support network brought the diagnosis about—I am an only child, and frankly, I always got along better with adults than I did my peers. I went to a relatively large university where 200 to 300 students filled giant lecture halls for introductory classes. My professors didn't know I existed. I became withdrawn and my grades suffered (taking 17 hours of classes didn't help). I did best in the two classes I had registered for without my advisor's approval—junior/senior level classics and political science courses in which I was one of 20 students. I made it through the school year, went home for the summer, and took stock of my situation. I made changes, and I made it out of there three years later. 

My depression and anxiety didn't resolve with graduation. My first job as a reporter meant always being on call, covering murders and deadly accidents, never knowing a holiday, and hardly seeing my parents. Perhaps I should have taken it as a sign that the newspaper had a group discount rate with a local counselor. At my first appointment, I spent the full hour talking to her but looking at her two dogs whose soft, soothing ears and warm brown eyes invited me to be honest with myself. 

My second counselor came into my life after I had triple bypass surgery that resolved a host of problems but created a new relationship with my body that I did not know how to negotiate. My third counselor and I stuck together for years, and he created an environment in which I was safe enough to explore my teenage traumas and tackle issues that prevented me from being as emotionally present as I wanted to be for my husband. 

I could not and would not have successfully navigated the past 15 years to get where I am now without help from mental health professionals. Their training in turn trained me how to help myself. Like any expert, they had knowledge that I did not. If I had wanted to rebuild an engine, I would have gone to learn from a mechanic. If I had wanted to learn how to fly, I would have gone to learn from a pilot. If I had wanted to learn how to paint, I would have gone to learn from an art instructor. I wanted to learn how to best care for my mental, emotional, and physical self, so I went to learn from a counselor. 

And there's not a single day that I regret doing so. 

Does my diagnosis mean that there's a mark in my medical file? Yes. Does that mean that I'll never be hired to become part of the CIA's spy network? Yes. Are those things more important than the fact that I am happier and healthier than I ever would have been without addressing my mental health needs? No. Is it fair that some people will and do judge me for taking this action to advocate for myself? No. Do I particularly care that they do? No because it is clear that they missed the anatomy lesson explaining that the brain is an organ—an extremely complex organ, the mysteries of which we are so very far from understanding. 

At Medicine X, I will be moderating a panel: "Depression in Chronic Illness and Coping Through Online Communities." In order to open the conversation to as many who wish to participate and address questions may not find answers elsewhere, I am asking you—yes YOU—to pose your questions to the panel. 

All questions submitted as a comment to this post between Sunday, Aug. 24 and Wednesday, Sept. 3 will be considered. Panelists will choose one question from those submitted to answer from the Medicine X main stage. Anyone interested in the conversation may tune in to Medicine X's through the Global Access Program, which will feature this main stage panel discussion from 5:25 to 6:10 p.m. Pacific Time on Saturday, Sept. 6. Real time commentary will be happening on Twitter via #MedX

After the conference, panelists will have the option to respond to additional questions in writing through a series of blog posts. 

Help us shape this important discussion about depression, chronic illness, and online resources. What do you want to know? Leave a comment to submit your question, and if you're on Twitter, connect with panelists at: @AfternoonNapper, @bacigalupe, @DrBeckerShutte, @ekeeleymoore, @Hugo_OC, @Strangely_TI

12 August 2014

Written Upon The Passing of Peter Pan

Those who give us so much sometimes give up too much of themselves. Hearts must receive to survive or they simply bleed out.

Find what fills your heart, what sustains you. Return to it again & again. Turn away from what drains you. You deserve a whole heart.

If you carry a whole heart, seek out those who do not in order to help them. Have the patience to hold another's heart — mindfully.

So much of depression is not sadness. It is emptiness. It is numbness. And self-destruction so often is an attempt to feel anything at all.

Do not think that depression must present itself through tears. It is a chameleon-like beast, hiding in plain sight.

To "struggle" with chronic depression is real as it never ever leaves. It lives with us — sometimes in a cage & sometimes in our chest.

The beast can be tamed. It is DAMNED HARD WORK to do & no one can do it for you. It will be terrifying. It will be worth it.

Once you have the tools to tame depression, you can develop the skills. These skills never will leave you; you can rely on them to save you.

Depression is cunning, almost comfortable for its familiarity. Change — even good change — is threatening because it is new.

If we open ourselves to the possibility of happiness, we run the risk of falling into the pit of despair, so we avoid feeling at all.

But joy — JOY! — is so luscious, so warm it is worth the risk. FEEL ALL THE FEELINGS! You are capable. You can control the beast.

Ask for help when you need it & if you are not heard ask again. Ask a stranger if you must.

If you need help, just want help, think that maybe help could perhaps be worth investigating — get you some. It's good stuff.

No part of depression equals being lame or being a failure or being weak or being dumb. It's just called being human.

And never ever feel that you are alone. You are not. You may not have found your people just yet. But you're not alone.

Captain James Hook: Prepare to die, Peter Pan!
Peter Banning: To die would be a grand adventure!
Captain James Hook: Death is the only adventure you have left!
"Hook" (1991)
Robin Williams (1951-2014)

14 July 2014

Design for Your Future, Design for Yourself

Recently faced with making a series of major life changes, a friend of mind decided to apply design thinking principles to his personal situation. He had accepted a fabulous new job that would require leaving the town he loved and long called home for our nation's capitol and doing so in a relatively short timeframe. Familiar enough with D.C., he started his relocation process with the information closest at hand — the dog and the cat were coming with him. And then he interviewed himself.

"I asked myself questions like: self, what kind of place do you want? What should it be near? What do you dislike about your current place? I made Post-Its with my must haves, wants and dislikes," he wrote.

Post-Its are a key component to the process at IDEO—the Silicon Valley design firm where my friend and I have been lucky enough to explore questions that begin "How might we..." and focus on patient-centered solutions within health care. Post-Its allow one to jot down an idea or make a meaningful doodle that is then both tactile and disposable, preserved but not permanent. From the multicolored confetti came a series of hotel stays in various D.C. neighborhoods to practice the commute to work and sample local restaurants. "In other words, prototypes," he wrote. 

I'd like to say that when I decided to approach my problem of achieving better work-life balance concerning my job as a magazine editor, my consulting and advocacy and my relationships with my family, friends and self that I too reached for my Post-Its and Sharpie. Rather I took a very literal approach to form following function. I made a flow chart, or perhaps more accurately, a decision tree

The goal was to determine what personal parameters I would apply in deciding whether or not to accept an opportunity. Some opportunities offer an abstract pay off while others come with cold, hard cash. Some clearly are worthwhile while others offer nothing by way of joy or enlightenment. For all there is a price to be paid, as saying yes to one thing limits one's ability to say yes to another—doing two things half-heartedly is no greater accomplishment than doing one thing well.

I spent a week on my own posing questions, redirecting arrows and contemplating additional possibilities before I sent my draft decision tree out to a group of personal advisors for review. Advocates praised it. Company managers played devil's advocates. And my friend who was designing his new life first suggested, "Seems like you are really wrestling with getting paid for doing the work you want to do," and then asserted, "Follow your damn dreams."

Following dreams inherently is easier when others believe one's dreams are worth following and thus will help make those dreams come true. I am fortunate in that this is the case for me and my dreams. It is enormously satisfying to know that those in the industry I have come to respect and admire seem to feel the same way about me. Their encouragement, partnered with my own stubbornness, has kept me moving along this path. 

Shortly after completing my decision tree, I had cause to implement its process, and accept a year-long contract to serve as administrator of an ePatient scholarship program that enables advocates to attend one of the foremost health care conferences. I also will be leading a workshop on making clinical trials more patient-focused and speaking at this conference as well as speaking at the world's premier nephrology conference. I have applied for a two-week design thinking internship with the intent of researching generosity in relation to financial giving so as to further develop strategic plans for my nonprofit and to a mindfulness in health care symposium focused on patients and caregivers within palliative medicine. If I am selected, I will consult my decision tree to determine these opportunities' return on investment. If I am lucky, this fall will be busy, financially feasible and personally and professionally rewarding. 

Too often I hear complaints from people who are so overwhelmed by what they have to do that they have no time for what they want to do. I say—put in the time and effort to determine one's priorities, to establish standards such that saying no allows one to say yes to something better. Design not for your current self but the self you want to be. 

05 June 2014

She's Not Here Right Now

Priorities. It's time for me to get mine straight. And right now, my first priority is saying "yes" to the things that matter and "no" to the things that don't.

The problem is that I'm not entirely sure what those things are. The second problem is that I resent having to choose.

Being an advocate is not my primary job. Since becoming an advocate with a very public persona in 2011, I've kept my professional employment and my advocacy work separate. My decision was two-fold. I did not want to accomplish anything as an advocate as a result of my position. (No, I'm the head of The Economist or the like, but my name is unique enough and the magazine widely distributed enough that there are certain circles in which I am known, and it's amazing how many people think they can favor their way into some ink). Secondly, the magazine, which has zip to do with health, is not an appropriate outlet for my advocacy voice. Do I push for historical preservation and cultural conservation? Yes. Do I call for hospital-acquired infection reduction and patient engagement in clinical trials? No.

Fortunately, my primary job also is a part-time job. An argument could be made that a publication having only a part-time managing editor is less than optimal. I would agree with that argument. However, I also have greatly enjoyed my freedom to come and go as I please and never be shackled to an office or office hours — so long as deadlines were met and I could be found via email or a phone call. Whenever I travelled for advocacy purposes, I took my real work with me. The magazine tagged along from Paris for Doctors 2.0 & You to the Metro in Washington, DC for Rare Disease Day, from Vancouver, Canada for B.C. Renal Days to Cleveland, OH for the First International FMD Research Network Symposium, from Palo Alto, CA for Medicine X at Stanford to Kansas City, MO for Partnership With Patients. Sometimes I even carried on the latest print edition to strategically leave in some airport in the hopes that its presence and the boredom of a long layover would lead to a new subscriber. In that regard my part-time job has been an all-the-time or any-time job. There is not a day or a time at which I could not be working on it.

I'd imagine that most people have such jobs — jobs that occupy the mind even when they do not occupy the hands. I hear rumor of people who go to an office, put in a solid 8 to 5 and leave it all behind when they walk out the door. I am not those people. However, t was one job I had — a test proctor for state licensing exams — that was so grinding, so regimented, so much a matter of process over product that proctors vehemently were discouraged from expressing a modicum of joy or sympathy for a test taker when he or she passed or failed. Test takers were not allowed to use their own writing utensils, wear hats, wear bulky clothing, eat or drink or take breaks longer than five minutes, during which time they were allowed to stretch, so long as they remained within my direct line of sight, and use the restroom (quickly). The test we administered most frequently lasted five hours. Work days were unpredictable, their length determined in part by the type of tests given but more so by the test takers themselves. Some days it was a push to clock an hour and half. Others stretched on for 10. I lasted nine months before the $9 an hour just wasn't worth it any longer and I walked out the door.

I've found myself in the position of determining a job's worth once again. Worth is about more than money, but when there's not much money to spare, money takes a dominate role in the equation. Certainly I want to be happy. I also want to continue to have a house. Having a house makes me happier than not having a house. Having groceries makes me happier than not having groceries. Thus having a job that pays makes me happier than not having a job that pays. And the job that pays is the job I have — not the mythological advocacy job upon which, I confess, I have been hoping to stumble. Advocacy is a word that I am using broadly to characterize this work for which I did not go to school, this proclivity for all things health care related, for fostering the patient voice in medicine. This isn't about waving around a colored flag and issuing a list of complaints. This is about getting elbow-deep in the quagmire of policies and prejudices to search for answers that can help change the system. This is about listening, analyzing and doing. This is about the Kingdom of the Unwell and the Kingdom of Healers laying down arms to unite as the Kingdom of People.

For me, to be able to help someone, to be able to make change for the better, to be able to collaborate with people who are passionate about making a difference too is worth so much more than money. I've found more meaning in my life in health care (and teaching) than I ever have in publishing.

For some, this greater personal depth and purpose in life clearly would indicate a need to leave the publishing world behind and transition to being an advocate full-time. But the power company doesn't accept payment in warm and fuzzies. The resolution then is to flip the predicament — rather than lament that doing what I love does not pay, how can I make what pays into something I love? Can I implement changes such that I see as much value in my job as I do my advocacy? Can I make it worth it?

In order to give more of myself to my job, I must give less of myself to my advocacy. To have less of myself to give necessitates that I make more strident choices about how I spend my time and energy. Effective Monday, June 9, and until further notice, I am suspending all advocacy work and related social media that is not specifically related to Medicine X or my own organization, FMD Chat.

It is my hope that this self-limitation will allow me the mental and emotional capacity to return to writing, which I love, and thus my individual voice will not altogether be silenced. So please look for me here.

Should you wish to contact me, please do so by blog comment or email

Or... make me an offer I can't refuse. 

13 February 2014

#HCSM Review - Feb. 13, 2014, #RareDisease Edition

The Feb. 13, 2014 edition focuses on Rare Disease Day, an annual, awareness-raising event marked around the world that aims to educate the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day will be held on Feb. 28.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. There are approximately 7,000 rare diseases. The lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis and difficulties accessing appropriate care.


Living in the Light — from Levi Gershkowitz
"These narratives are shared by individuals facing the challenges of life affected by rare genetic disease. They are aimed to promote an increase in public awareness about the prevalence of rare diseases, as well as an increase in patient advocacy."

MODDERN Cures: Who, What, and Why? — from Amy O'Connor
"More than 30 million Americans live with a rare disease, many of which have few or no treatment options. But there’s hope on the horizon. Public policies like the MODDERN Cures Act could incentivize the development of treatments and cures for unmet medical needs - such as autoimmune diseases, neurological conditions, cancer, and rare diseases."

#RarePOV Conversation Generates Strong Enthusiasm for RDD — from Stephanie Fischer
"Recap of last week’s #RarePOV tweetchat during which leading rare disease advocacy organizations and individual patient advocates came together to share resources and plans for the upcoming international Rare Disease Day. More than 100 individuals and organizations participated, generating more than 680 tweets in the hour-long conversation."

One in Billions: Rare Disease Day 2014 — from Emily Bradley
"One rheumatologist explained to me that treatment options for many rare disease patients sit, waiting, behind an “unbreakable glass wall.” Patients suffer for years—many die—because they cannot afford the few treatments available. With just enough income to keep me at the poverty line, I was unable to receive full funding assistance. I fought for that medication the way I fought to get out of bed. I fought to find resources, help, anything, anyone, while I also fought to brush my teeth every morning. I found myself constantly internally screaming, why does no one fight for me or with me?"

Rare Diseases 2.0 - A Business-Oriented Blueprint for the "RARE" Universe — from Yoni Maisel
"Collectively we have gained the attention of those who can influence and impact our futures. Opportunities exist like never before. But with almost 7,000 Rare Diseases, there will not be opportunity for all."

Para...what? — from lovehopeandcourage
"In March our eldest daughter Tayla, who was just 12 at the time, was diagnosed with a rare neuroendocrine tumour called a Paraganglioma, a Para what I hear you say…exactly! This is something we were never, ever expecting or would have ever dreamed of going through, again."

Treating illness and preventing disease with genetic testing — from The Conversation
"Genome sequencing has the potential to improve the diagnosis of conditions caused by changes in the DNA and indicate what treatments may be most effective. Importantly, it may also red-flag treatments likely to cause adverse reactions."

Dr. Groft of NIH on New Hope for Rare Disease Research and Treatments — from PhRMA
"While there has been amazing progress, the road ahead is still at times daunting as we strive to find better, quicker and less expensive methods to translate research discoveries into new interventions that meet safety and efficacy requirements. The encouraging news is that the rare diseases community appears stronger than ever, and there has been no better time in history to build on existing momentum and resources."

What are the biggest challenges for the rare disease community in 2014? — from pharmaphorum
"Patients can't benefit from new treatments and other medical advances if they can't get an accurate diagnosis. And diagnosis clearly remains an issue for the rare disease community."

Two Children, One Rare Disease and Their Mother Who is Making a Difference — from Parade
"Jana Monaco misses memories of what might have been. Her son’s first day of kindergarten. His Little League games. Prom pictures. The life experiences we all take for granted ended abruptly for Stephen Monaco almost 13 years ago when a rare disease, isovaleric acidemia (IVA), left him permanently disabled, both physically and intellectually, at the age of 3."

Advocates Fight for Justina Pelletier, Teen Held by State in Psych Ward — from ABC News
"Justina was diagnosed with somatoform pain disorder, a psychiatric condition when a person experiences physical pain for which no known medical explanation can be found, according to her family. The case highlights a growing concern among those with rare diseases and autoimmune disorders that physical symptoms that cannot be explained will be dismissed by doctors as psychosomatic."

Look to Mary Pat Whaley at Manage My Practice for the next #HCSM Review on March 5, 2014. 

07 February 2014

#HCSM Review - Call for Submissions, Feb. 13 Edition, #RareDisease

The Afternoon Nap Society will once again be hosting HealthCare SocialMedia Review, the blog carnival for those interested in health care social media.

The Feb. 13, 2014 edition will focus on Rare Disease Day, an annual, awareness-raising event marked around the world that aims to educate the general public and decision-makers about rare diseases and their impact on patients’ lives. Rare Disease Day will be held on Feb. 28.

A disease or disorder is defined as rare in the USA when it affects fewer than 200,000 Americans at any given time. A disease or disorder is defined as rare in Europe when it affects fewer than 1 in 2,000. There are approximately 7,000 rare diseases. The lack of scientific knowledge and quality information on rare diseases often results in a delay in diagnosis and difficulties accessing appropriate care. 

Bloggers around the world are encourage to submit their blog posts for consideration. Posts should focus on some aspect of rare disease such as a patient's experience; a provider's difficulty making a diagnosis; pharma's burgeoning rare disease drug market; social media's role in connecting patient communities; or access to research funding.

Want to participate in recognizing Rare Disease Day in another way? Join in the Raise and Join Hands Movement

And if you read nothing else about rare disease, read Lisa M. Jarvis' "Orphans Find A Home" from Chemical & Engineering News. 

To submit a blog post to the Feb. 13 Edition of #HCSM Review, email theafternoonnapper (at) gmail (dot) com with the following information:

Email Subject Line: HealthCare SocialMedia Review
Blog Title:
Blog URL:
Post Headline:
Permanent Link To Post:
Name, Username, Nickname, or Pseudonym:
Description or brief excerpt:

Deadline for submission is WEDNESDAY, FEB. 12 at NOON (Eastern Time). 

06 February 2014

Staircase Wit Leaves Us All Cold

Snow had fallen through the night, blanketing the mountains with an inch or more of glistening white. It was the kind of day best spent at home, but an appointment required that I drive to town.

I stopped at a gas station along the way. The station is near the corner of where my parents almost bought a house and not too far from where they actually did. It's open most hours of the night, perhaps even all 24 of the day, and is thus one of my regular stops.

A young man wearing an oversized black jacket and black knit hat pulled tight over his heat was standing directly inside the store's double doors, talking on his cell phone, as a middle-aged, female attendant mopped up melted snow from entryway. I grabbed some Reese's Cups and went to the counter to pay.

The attendant put her mop and bucket away, came to the register, opened the drawer, and began to count her cash. There wasn't much there—a twenty or two and a dozen one dollar bills for which she ran a receipt that she tore from the register and slipped inside a clear envelope along with the bills and then deposited the sum in a dropbox on the counter behind her. The young man walked outside. The attendant looked past me through the glass door. She apologized for making me wait, but the young man on the phone was having trouble. He needed kerosene, presumably for a heater, given the weather; however, his bank card wouldn't allow for an overdraft to buy it, she told me as she rang up my Reese's Cups. The young man had said something about needing the kerosene badly enough that he might "have do something he shouldn't do" in order to get it.

I pondered the attendant's words for a few seconds. At first, I imagined she meant the young man would fill his kerosene container and drive away without paying. Then I realized that she feared the young man would try to rob her. Rather than call the police, rather than lock the door behind the young man after he'd walked out, she simply had emptied her register so there wouldn't be any cash for him to steal.

"I'll stay here with you if you want," I said.
"Nah, people are still coming in," she said, once again looking past me out to the parking lot where the young man was sitting in his car, still talking on the phone.

I paid for my Reese's Cups and walked to my car, which was parked next to the young man's. I took my time buckling my seat belt. I peeled apart the crinkly, orange candy wrapper and slid a single peanut butter cup into my palm. I peeled the dark brown liner away from the chocolate. I took a nibble, and I watched. The young man appeared, more than anything else, cold. The attendant opened the store's front door and leaned against the stuccoed wall as she took a nervous drag off a cigarette. In my review mirror, I could see three other male customers busy gassing up their pick up trucks or cleaning salt from their windshields. Slowly I backed out of my parking space and headed on up the road.

As I drove, I contemplated what it must feel like to be a woman working alone in a place that's prone to draw criminal behavior. Though the gas station was in a good enough location, working as an attendant hardly qualifies as low-risk employment. There's a reason those places have security cameras and it's not to make sure the Little Debbies don't run away with the Slim Jims.

I also contemplated the small yellowish deposits on the station attendant's eyelids and whether or not I should have asked her if she knew about her hypercholesterolemia and should probably see a doctor about it.

And I thought about the weather. It was 18 degrees in the sun, and anyone without heat indeed would be desperate enough to do something stupid.

I was probably a mile down the road when I realized that I had the power to diffuse the situation and possibly impact the future. Though not well off, I certainly had $25 I could use to buy the young man some kerosene. I could do it quietly—just walk inside, tell the clerk to ring up the purchase, pay for it with my debit card, and walk out. I could wave to the young man in his car, tell him he could get some kerosene, and that I hoped it helped keep him warm. I imagined this little act of kindness would teach the young man about compassion and life choices. I imagined that the attendant wouldn't feel as afraid.

Although I was three-quarters of the way home, I turned onto a side road, hooked a sharp left, and headed back to the gas station, peering through my increasingly obscured and salt-speckled windshield. Traffic was slow through the wintery slush, and as the minutes ticked away, I became increasingly certain that the young man either would have gone ahead and done something stupid as the attendant feared he would—or just driven away.

And I guess that's what he did. When I pulled up to the gas station, the young man's car was gone. The scene seemed undisturbed. I was relieved, yet I regretted not having turned around sooner. No one needed to be without heat. No one.

I circled through the parking lot, and I imagined the attendant looking up from her register, past whichever customer was at the counter, and through the glass doors at just the right moment to see me slowly driving past. Would she think I had come back to save her or only to save myself the guilt of having walked away?

I doubt either one of us knows.

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