(My) Patient Leadership in Health Care

They say my grandmother used wait on the stoop of the family’s crackerbox house in Southside Chicago and watch as my father walked to school to see if he would get in a fight before he got to the end of the block. The eldest son of a Polish steel mill worker who dropped out of high school, my father was on the wrestling team and cleaned the inside of tanker trains. But he was smart. He liked science and math, went to college on a scholarship, majored in economics, and went on to Cornell Law School.

As a lawyer, he represented the incarcerated’s rights at the state department of corrections, practiced defense in the state supreme court, and became chief legal counsel at one of the state’s 16 public universities. He helped build houses with Habitat for Humanity, served midnight breakfast to college students during exam week, and tutored his daughter who did not inherit his aptitude for science and math. He taught constitutional law and never once found himself on the wrong side of the law save for a speeding ticket or two. Upon his retirement, he was vice chancellor of technology transfer as well as chief legal counsel and one of the university’s most senior and respected staff members. One could say he did all right.

He did all right by mom and me too. Ever a man of his word, if dad said he was working late, he was. He saved for family vacations by eating a sandwich at his desk for lunch everyday. He kept the official score book at my softball games, sitting on the bleachers in his suit and tie, and bought, arranged, and delivered 40 long-stem roses to my mom on her 40th birthday.

My father’s faults I’ve come to understand more as I’ve grown older — not simply what they are (any teenager will tell you what’s wrong with her parents), but why they exist, how they influenced me, and which ones I too carry. He gets angry when he’s scared and feels out of control. He’s somewhat emotionally awkward and expresses affection by trying to foresee all possible problems, caution against them, and devise a plan to prevent them whether he knows what he’s talking about or not.

I don’t have his temper. Being in situations in which my life has been on the line taught me a lot about what’s really worth getting worked up over. I am more spontaneous, often to his ire.

He became more than his humble hand foretold, and he achieved that goal while always taking the ethical path. For that I admire him greatly. For instilling that same sense of ethics in me, I am thankful. And it is his grit, his drive, his call to service, his belief in doing what is good and right that have become my own.

From age 24 to 31, I underwent triple bypass surgery, suffered a stroke, lost my left kidney, had four brain aneurysms repaired, and survived a gastric rupture before I was diagnosed with a rare variant of a rare disease called intimal fibromuscular dysplasia. Its cause is unknown. There is no treatment. Such things might crush some people. I, on the other hand, persisted.

Throughout my period of survival, I learned so much both practical and personal, and I found a calling in patient advocacy. I became an advocate because I could use my pain for the good of others.

As my leadership role grew, I felt I lost my place as a member of my patient community. It seemed that I could not ask those who looked up to me for the support I needed. My professional distance actually isolated me from what had drawn me into advocacy — my fellow patients. 

The kind of leader I want to be has a heart, and honestly I lost touch with mine. Putting my head over my heart had been critical to my survival — a learned coping mechanism. Similarly, my style of leadership came to be, at least outwardly, impenetrable. I strove to be judicious and fair, analytical and unflinching. I cultivated that well, so well that somewhere along the way I began to lead only with my head, and I sequestered away my heart such that it could not betray me.

It was a fellow patient willing to give me a proper shaking by my emotional shoulders who brought me to the realization that in order to be a good leader, I can not lead only from my head, and that the opposite is not to lead only from my heart. I am pursing training so that I may learn to balance both, re-establishing fellowship to rekindle the passion I know lies within me, and kindling the belief that I can become the leader I’ve never had — the kind I would follow into battle, the kind with whom others hope to work, the kind who teaches others how to be good leaders too. 

#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. 

#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). 

A Circle, A Stroke

Dusk had fallen as I nosed my car up to the locked gates of the small elementary school on the north side of town. I turned off the ignition, removed the keys, opened the car door, stepped out onto the pavement, rounded the back corner of the car, and waited for my husband to pop the hatch. He reached inside, both hands gripping aluminum and rubber, and pulled out my new lime green and toothpaste white bicycle.

"I am 33. I am 33. I am 33," I chanted beside him. It was as much to myself as to any passerby. Standing only five-feet-tall and dressed in pink shorts and a purple shirt, I looked the daughter to my husband's six-feet-tall-and-bearded father.

"You got it?" he asked, one hand on the bike as the other reached up to close the hatch.

"Yeah," I said, rolling the bike along with me toward a small footpath alongside the gated school driveway.

The empty school parking lot had been my idea. It was Sunday and school was not yet back in session, so the parking lot satisfied my two requirements—there would be no audience, and there would be room to careen haphazardly without hitting anything of worth. My knees, palms, and head were another matter altogether.

It had been at least 15 years since I'd last been on a bike. As a child living in the mountains, I was at a loss for flat places to learn to ride, and thus didn't until age 12 when, after my grandmother's funeral, I found an old bike in her basement. In the Jones' Fish Camp parking lot, my father ran along beside me, holding on to the back of the bike's seat, as is apparently the only way in history man has ever devised to teach a kid how to ride. I suppose it's marginally better than the float or die method of teaching swimming.

That summer my father gave me a bike for my birthday. The bike was emerald green with knobby tires and 18 gears for climbing hills. I didn't like hills. Going up one was hard, but worse yet was rolling down one backwards, as I constantly feared would be my end. I didn't like going down hills forward either, which I blamed on my sixth-grade teacher. Her son was riding his bike too fast when he hit loose gravel. He and the bike slid out of control across the pavement, tiny rocks carving into his skin. He was hospitalized and for days on end subjected to hot tub soaks to soften his skin that was then scrubbed with a wire brush to expose and expel the grit and debris. His screams echoed throughout the hospital.

At least that's how I remembered the story, so I rode slow. I was a mountain biker burdened with a creative and vivid mind bent on imagining my severe injury at every corner and creek crossing. Though I disliked hills, I very much liked riding down trails so rocky that no earth showed through and my mind maintained such a narrow focus on picking the path of least resistance that there was no room for fear.

Thankfully my accidents were few. There was a run in with a sawbriar that ripped a now tiny scar into my left thumb. There was a drop-off that well bled my right knee. I nearly passed out once and did pass out on a ride up an old gravel road, which scared my dad, but the doctor ruled that I'd simply not had enough time to digest my morning pancakes.

I didn't take my bike to college. I wasn't comfortable riding around so many people and in such tight quarters. The majority of other students seemed to agree, and historic brick sidewalks took care of the rest. By then Dad's knees weren't what they used to be, and our bike riding just stopped.

When I had a stroke at age 28, bike riding was the last thing on my mind. I wasn't sure that I would be able to walk again unaided, much less command any sort of transportation. It took six months for me to get back to driving, and then I only allowed myself to go out during day-light hours on familiar roads at low speeds and with a chaperone. It was a tremendous victory when I had built up enough confidence to go the 1.8 miles to the grocery store alone.

Five years later, there are hardly any outward effects of my stroke. Those who know what Horner's Syndrome is—the drooping of an upper eyelid caused by a stroke's damage to the sympathetic nerve system—can spot it once I mention my history or I'm exhausted. However, the residual loss of pain and temperature on my right side isn't visible, nor is the fact that I can not walk with one foot directly in front of the other, as I need a wider base to maintain my balance.

Balance has been my greatest hindrance to re-establishing a "normal" life post-stroke. One really never realizes how often he or she stands on one leg, reaches for something far away, takes the stairs without using the railing, or walks somewhere carrying a cup of coffee until one is unable to do so. The ability to perform these extraordinarily simple tasks took years to get back. Along the way, I was accused of being drunk or high and given dirty looks for making use of handicap accessible facilities because the public didn't perceive me as someone who could be a stroke survivor.

Any stranger looking on as I stepped astride my shiny new green and white bicycle in that elementary school parking lot wouldn't have seen a stroke survivor either. Any stranger would have seen a hand grab tight on my arm as my first attempt to get both feet on the pedals left me hopping and falling over. Any stranger would have heard my husband's flip-flops scuff to an abrupt stop as on my second attempt I pushed off, turned the wheel too hard to the right, screamed wild-eyed with indefatigable grit, and hauled off for the far end of the parking lot laughing. Any stranger would have seen me gently squeeze the hand brake, lean into the curve, and ride wide circles around my husband as he called out, "You look good!"

Any stranger would have perceived the nothing out of the ordinary, the everyday; yet sometimes I feel that the stranger is me, as I push to discover who I am now instead of dwell on who I used to be.

National Orange Popsicle Week Comes to Knoxville to Raise Stroke Awareness

Learn more about stroke from staff at University of Tennessee Medical Center and join in recognizing National Orange Popsicle Week from noon to 7 p.m. May 19 at Pop Culture, Knoxville’s gourmet popsicle shop.

“I love the simple and straightforward idea of taking something I love doing and being a part of—making popsicles—and using it as a basis for education,” said Jason Mitchell, Pop Culture’s owner. “It’s so much easier to learn and be receptive to awareness when you hare having fun.”

National Orange Popsicle Week (NOPW) began as a way for a young woman who suffered a major brain stem stroke at age 24 to raise awareness of stroke in young people. One in five strokes occurs in adults age 22 to 55. Stroke is the fourth leading cause of death in America and a leading cause of adult disability, according to the National Stroke Association.

UT Medical Center, which the American Heart Association has recognized for improving stroke care by promoting consistent adherence to the latest scientific treatment guidelines, will be providing free blood pressure screenings and stroke education during the popsicle-based awareness event.

A stroke occurs when there is an interruption in blood flow from the heart to the brain, causing brain cells to die. The May 19 popsicle event at Pop Culture will raise funds to purchase iPads for the UT Stroke Center’s use in aphasia treatment. Aphasia is a disorder caused by damage to the parts of the brain that control language. Aphasia can result in difficulties reading, writing and speaking.

“Stroke is a devastating disease: it happens like a tornado and the lives of the survivor and their families are never the same,” said Jennifer Henry, BSN, RN, CNRN, director of the UT Stroke Center. “Many people mistakenly believe that stroke only happens when people are older, when in fact, stroke can happen at any age. It's critically important that people take a look at their own risk factors and take steps to reduce risk. Everyone, even children, can learn to recognize the warning signs of stroke and the importance of calling 911 when stroke symptoms happen. NOPW shares this message in a unique way.”

Amy Wooddell’s first symptoms were dizziness and nausea, which didn’t neatly fit the acronym FAST, which is used to recognize and act on stroke symptoms—Face: does one side of the person’s face droop? Arms: if the person raises both arms, does one arm drift downward? Speech: does the person’s speech seem slurred or strange? Time: if any of these symptoms are observed, call 9-1-1 immediately.

Wooddell went to the emergency room only to be given medication for vertigo and sent home. The next morning she felt worse. The cause was a dissected vertebral artery, one of the major arteries leading to the brain. Doctors were unable to treat the dissection, and Wooddell later that night suffered a brain hemorrhage and lapsed into a coma. When she woke up days later, she was paralyzed and unable to speak.

Wooddell’s recovery was arduous, including 30 days in the intensive care unit. As she became more vocal, she finally was able to tell her new husband that she loved him—and that she wanted an orange popsicle.

However, Wooddell wasn’t allowed solid foods—even a popsicle—until she passed a swallowing capability test while in an inpatient rehab unit. The day she did was a victory, and her rehab caseworker bought an entire box of orange popsicles for Wooddell and her family. The orange popsicle was a much craved delight after nothing but water and liquid nutrition and became a symbol of recovery.

Fellow young stroke survivor, Sarah E. Kucharski learned about National Orange Popsicle Week through social media. The mission and the method resonated with her. Like Wooddell, Kucharski had a stroke at age 27 that was first diagnosed as vertigo, despite having a complicated vascular history. She spent a week in the hospital with extreme dizziness, double vision, and the inability to walk unaided. Nonetheless she was told that her symptoms would go away as quickly as they had developed and sent home with a walker.

It wasn’t until the first night out of the hospital that Kucharski’s discovered that she had no temperature or pain sensation on the right side of her body. She consulted with her primary care doctor who referred her to a neurologist who immediately said that, given her symptoms and Horner’s syndrome causing her left eye to droop, her case was “a text book” stroke scenario.

Kucharski’s recovery was self-driven, and it took another four years for her to finally receive the diagnosis of fibromuscular dysplasia (FMD), a rare vascular disease that can cause narrowing of the arteries, arterial dissection, aneurysm, and stroke. Kucharski has a rare version of the rare disease, which has no cure, and no real treatment other than management of symptoms and surgical repair of the effected arteries. She has used her own experiences as motivation to found an international nonprofit organization dedicated to those affected by fibromuscular dysplasia—FMD Chat.

While Kucharski and Wooddell share similar stroke stories—and a love of popsicles—they don’t share geography. Wooddell lives in Kansas, and Kucharski lives in Western North Carolina. NOPW may be rooted in Kansas, but strokes strike all around the world, so once Kucharski learned of NOPW, she wanted to get involved.

As managing editor of magazine dedicated to the Southern Appalachian region, Smoky Mountain Living, Kucharski got to know Knoxville through her work travels. She had read about Pop Culture and visited the mobile popsicle vendor’s bricks-and-mortar shop on Walnut Street last year. With the goal of bringing NOPW to the region, she reached out to Pop Culture’s owner.

“You should check out this event. If there’s anyone who could make it happen in Knoxville, it’s you,” she wrote to Mitchell on the Pop Culture Facebook page.

Mitchell’s response was enthusiastic. He immediately offered up the Pop Culture shop where he makes and sells his famous popsicles using ingredients from local vendors, milk without rBGH growth hormones, and sweeteners such as organic cane sugar, honey, or agave. He’s even put extra effort into making the color orange.

“It took me months to find something natural, and a company out of Louisville, Ky. formulated some orange coloring out of Beta-Carotene for me to use, and it's odorless and tasteless,” Mitchell said.

For NOPW, Mitchell will be serving up his Orange Cream and Mango popsicles, but he isn’t afraid to get creative.

“I may make something else that is orange, but I have to play around a bit with the ingredients and their respective colors to see if something else ‘Orange’ is possible,” Mitchell said. “The bright red of Strawberry Lemonade or the robust purple of Blueberry Vanilla would be immune to adding natural orange color.”

Pop Culture is located at 706 Walnut Street next to the Knox County Public Library, Connect via Facebook at facebook.com/popcultureknox. To learn more about National Orange Popsicle Week, visit nopw.org or facebook.com/nationaorangepopsicleweek.

#HCSM Review—Health Affairs & Rare Disease Edition

This Feb. 13, 2013 edition focuses on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient.

Health Affairs is the New Shirtless Dancing Guy

Nick Dawson

Dawson attended the HA briefing in advance of the journal's February edition dedicated to all things ePatient. He calls attention to the fact that no "actual patients" were on the panel, while appreciating what HA has done with the issue. Listen in to audio from the HA briefing.

‘Patient Activation’: Real Paradigm Shift or Updated Jargon?
Jacob Molyneux

A nice summary of key issues from the HA briefing, which Molyneux, American Journal of Nursing senior editor, attended in D.C. Molyneux is spot on as he writes, "It’s unlikely we’d be talking so much about patient engagement if we weren’t facing, perhaps as never before, the need to do something about the glaring gap between costs and quality in the U.S. health care system."

American Institutes of Research

AIR authors contributed two articles to the HA edition. The first article compares data available with what patients are seeking. The second suggests a framework for increase patient engagement. The link in turn links to reprints of both articles in full.

Family Races Against the Clock for Treatment for Giant Axonal Neuropathy

Eileen O'Brien
Lori and Matt Sames are fighting for the life of their daughter, Hannah, who has the ultra rare disease, Giant Axonal Neuropathy (GAN). When Hannah was diagnosed in 2008 there was no GAN patient organization, so the family started Hannah’s Hope Fund and are about to start a gene therapy clinical trial.

A New Start - One Conference at a Time

Sean Ekins

App developer Ekins discusses his inspiration for Open Drug Discovery Teams (ODDT), which applies the concept of open sourcing to the collaborations of research and awareness for rare diseases. Yet within the technology is the humanity and curiosity that leads to innovation.  

Hopes and hurdles in the fight for Issac and his rare disease

Adriana Barton

Canadian press The Globe and Mail shares the story of a young patient diagnosed with MPS VI, an extremely rare metabolic disorder. The article explores the burden rare disease patients face without a large enough population of patients to submit to drug testing, as well as pharma's general reluctance to invest in drug development for small populations.

Employee Social Media Policies After NLRB Appointments Invalidated by Federal Court ... Everything You Know Is Wrong?
David Harlow
The National Labor Relations Board has issued a series of reports based on its decisions in cases regarding employer regulation of the use of social media by employees. Now that the validity of recess appointments to the NLRB has been upended by the DC Circuit Court of Appeals, these – and many other – NLRB rulings are technically invalid. Should health care employers therefore ignore the NLRB precedents on regulating social media? Harlow says no – the contours of the rulings should still be followed in sensible social media policies.

Who is the Healthcare Consumer?

Nicola Ziady

Breaking down age brackets, Ziady explores connecting the brand with the consumer. "More and more, patients are shopping around for care, the same way they do for other consumer services. Patients are actively researching their clinical care alternatives to determine how and where they will spend their healthcare dollars."

2012 Health Survey Data

Pew Internet

Check out this preliminary version of the September 2012 health survey data from the Pew Research Center. A full report will be released later in the year.

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

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, 2013 edition will focus on the following themes: the Health Affairs Briefing Reminder: New Era Of Patient Engagement held on Feb. 6 in Washington, D.C. and subsequently released edition of Health Affairs — and — the upcoming Rare Disease Day: Disorders Without Borders to be held worldwide on Feb. 28. Included within these focus areas are topics such as health literacy, drug development, healthcare costs, patient-centered care, and deliberations on what makes one a patient (are we truly ALL patients?).

Email submissions should include 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 Tuesday, Feb. 12 at NOON. Email submissions to theafternoonnapper (at) gmail (dot) com. 

Learning How To Take No For An Answer

Being an advocate is hard. 

In public, we celebrate the victories. We laud partnerships, and announce accomplishments. We mark honors, and unveil new opportunities. What we don't do is draw attention to our failures. 

For every email sent, there are five more unanswered. For every sponsor whose logo bedecks the ballroom banner, there are ten more who said no. For every grant awarded, there are twenty more for which one was unqualified to apply or deemed unworthy. For every yes, there are a hundred replies no.

To fight for a cause is to be beleaguered by it, for even successes beget problems. To fight for a cause is to work one's self out of a job, for true success means that one no longer is needed. 

Confession: sometimes I wonder what it would be like if I just stopped. What if I went off the radar, stopped pushing, got quiet, took up sewing instead? I could cancel all my doctor's appointments, quit taking my medications, move out even further into the country, write with pen and paper, and see the world from a perspective no farther than the tip of my nose. There would be handmade afghans, and kittens, and tomatoes, and a screen door slamming shut. Life would be as Southern as Eudora Welty, and one day years down the line I'd fall asleep in a lawn chair in the sun and just not wake up.

Or I'd get all bunkered up in a holler somewhere and just be lonely as sin, while wishing I could do more with my life than just waste away into a shell of a bitter old shrew. Either way. I'm not much good at happy mediums. 

The point is this: the next time you are dealing with someone who doesn't have to do what they're doing, who is giving his or her own time to a cause, who is asking you to consider helping—think just a little longer before you answer. Some people say, "Well, we just get asked to help all the time, and we can't say yes to them all." Granted, that may well be true. Consider though what you're being asked for and by whom. Consider the relative magnitude of what you'll give and what those in need will get. And above all else, approach those who are fighting for a cause with an attitude of respect and a willingness to problem solve—perhaps if you can't help you know someone who can.

Medical Research and the Gaps Between Cause, Treatment, and Cure

I am sick, and I am tired.
I am sick of being an anomaly.
I am tired of fighting against my body.
I am sick of reading headlines about unnecessary, yet well-funded, research.
I am tired of not being considered a sound research investment.
I am sick of competing for attention.
I am tired of being sent home without an answer.
I am sick of doctors who think they know more about a disease than the patients who live with it.
I am tired of doctors who know nothing about my disease at all.
I am sick of money being wasted collecting data that is too vague to provide answers.
I am tired of feeling as though any true breakthroughs will have to come from the patient community.

Every day fibromuscular dysplasia patients connect with one another in a Facebook group facilitated by the international, nonprofit organization FMD Chat, of which I am founder. Every day this group of patients checks in on one another. Every day group members discuss how they're feeling—physically and emotionally. Every day we share test results.

Every day we wonder why no doctor seems more interested in the similarities that are found in our stories. Every day we hope that rather than doctors calculating the percent of patients reporting certain vascular events or peering at biopsies and DNA samples that a doctor will ask us how we feel. Every day we hope for a treatment—much less a cure. Every day we are disappointed.

It grows more difficult not to become bitter.

Fibromuscular dysplasia (FMD) is a noninflammatory, nonatherosclerotic arterial disease that is most commonly seen in women. It may present at any age, but is more commonly discovered when the patient is between the ages of 20 and 60 years old. Just nearly a year ago, on January 30, 2012, I wrote about a FMD patient registry—which so far has cost more than $180,000—and at the time had yet to reveal any information that was necessarily "news" to the medical or patient community—at least those who were familiar with the disease. Of the first 339 patients enrolled, patients reported high blood pressure (66 percent); headaches (53 percent); rhythmic ringing in ears (30 percent); dizziness (28 percent); a whooshing sound in the ear (24 percent); neck pain (22 percent), according to data released at the International Symposium on Endovascular Therapy. 

Per Dr. Jeffrey Olin's presentation at ISET, "there has been virtually no new information in the last 30 years" regarding FMD, as the result of "small case series, case reports (the majority of published papers are single case reports), nothing on pathogenesis, little on genetics, nothing on imaging, little on methods of angioplasty, no new classification since Mayo Clinic 40 years ago." In saying as much, Olin does a bit of a disservice to his own prior publications on FMD and publications by those doctors oft associated with FMD. However, the 2012 conclusions drawn from the registry were widely familiar—FMD is often found by accident after a stroke or transient ischemic attack; it should be looked for in young patients with high blood pressure or migraine-type headaches; it can be diagnosed with angiography, CTA, or MRA; angioplasty can be used to open up affected arteries if done early enough; lood thinners and antiplatelet drugs may be prescribed; FMD can lead to a tear in the artery or permanent kidney damage; it is unclear what causes FMD; FMD is an underdiagnosed disease.

For patients to enroll in the registry they must travel to one of a handful of participating centers. Of the 339 patients included in the ISET report 148 were enrolled at the Cleveland Clinic in Ohio; 68 at Mount Sinai in New York; 35 at the University of Michigan; 32 at Alliance Health in South Carolina; 20 at North Central Heart in South Dakota; 18 at Ochsner in Louisiana; 18 at the Mayo Clinic. Data indicates that 328 procedures were performed on 171 of the patients enrolled, with 54.3 percent receiving Percutaneous Transluminal Angioplasty; 21.3 percent receiving Percutaneous Transluminal Angioplasty and Stenting; 8.8 percent receiving a vascular bypass; 4.9 percent receiving endovascular repair of an aneurysm; 2.7 percent receiving open surgical aneurysm repair; and 7.9 percent in the "other" category for therapeutic procedures. Of these 171 patients, 73.2 percent's target vessel was the renal artery. 

Such findings are of clinical value for those unfamiliar with FMD, and the conclusion that FMD presents in the carotid and/or vertebral arteries as often as the renal is indeed intriguing and aligns with the conclusion that "the most common presenting symptom/sign was hypertension followed by headache, pulsatile tinnitus, and dizziness." Patients among the FMD Chat community are well-acquainted with these symptoms; however, there remains a significant gap between recognizing the prevalence of these symptoms and treating them. 

Hypertension in FMD is caused by renal artery stenosis, which causes the kidney to emit renin, a chemical that raises the blood pressure. This hypertension often is treated with anti-hypertensives widely used in the general population. The problem is that FMD related hypertension often is resistent, requiring multiple medications and high doses to manage. These drugs—as with all drugs—come with their own sets of complications, and to many patients fulfill the cliche "the cure is worse than the disease" in terms of physical effects, as patients typically do not feel hypertension, known as the silent killer, while anti-hypertensive side effects such as swelling, coughing, chest pain, irregular heart beat, fainting, nausea, and shortness of breath are much more noticeable. Headache related to FMD becomes complicated by the fact that patients generally are advised not to take NSAIDs, which can cause kidney and stomach damage. Those with migraines are further restricted if prior vascular events such as uncontrolled high blood pressure or stroke contraindicate vasoconstrictors such as the commonly prescribed Imitrex. The Federal Drug Administration has approved no drug to treat tinnitus, and, based on what patients have reported within the FMD Chat community, dizziness typically appears only intermittently, making it a somewhat vague symptom to treat in any manner other than a directive to "stand up slowly." 

Granted, only about 250 of the approximately 7,000 rare diseases in the world have FDA approved treatments; however, treating symptoms of a disease is a different exercise than treating the disease's underlying cause. The FMD community is in dire need of measures to improve patients' quality of life. Research into the disease's genetic factors, while needed, does nothing to help patients currently living with the disease. And so a year after first issuing my plea, I say once again, "More must be done across the related specialities to address the issues that many FMD patients struggle with on a day-to-day basis including crippling fatigue and pain, the inability to work and lost income, depression and anxiety, isolation and fear. These issues are imminent threats to patients' overall health, and without a concerted effort to holistically treat patients there may well be fewer patients willing and able to participate in research studies."

What has changed in this year's time is that FMD Chat, then a fledgling organization, has grown, and that I am making it a personal mission to improve current patients' quality of life. Part of this mission is selfish—I am an FMD patient, and I want better care for myself. However, I also want better care for the hundreds of FMD patients who have made FMD Chat part of their support network and for all the patients FMD Chat has yet to reach. This mission is about making a difference and caring tenaciously for a group of patients in need, a group of patients that I have come to consider my friends and family.

Learn About the TREAT Act

Get Involved in Rare Disease Advocacy

Join in Observing Rare Disease Day, Feb. 28, 2013

Mixed Emotions—A Christmas Story

When I'm in the kitchen, nothing else exists. There's no stress, no deadlines, no illness, no worry. I commune with pot and spoon and liken my seasoning and stirring to an indoor form of gardening—cheaper than therapy and resulting in good things to eat.

Unlike therapy, when my soul calls out in the dark hours, cooking and gardening don't keep office hours. There's an old R.E.M. song that I can't help but sing when I'm out pulling weeds by the light of the moon, "Though all the feelings that broke through that door/ Just didn't seem to be too real/ The yard is nothing but a fence, the sun just hurts my eyes/ Somewhere it must be time for penitence... Gardening at night..." Brutal cold and whipping winds made gardening impossible Friday night, so instead, I set about baking. Three runs of scones came together as amalgamations of flour, sugar, and half and half. I used my grandmother's cookie cutters to give them shape—candied ginger and coconut diamonds, lemon and cranberry trees, and spicy fruited hearts.

Adorned with a dusting flour—it was after all all-purpose—I curled up on the couch while my scones cooled. The house was warm and smelled of sweetness as the Christmas tree twinkled and the dog on his bed twitched with muffled dreaming barks. It was about this time three years ago that an interventional radiologist was noodling around in my brain's vasculature, weaving a tiny basket of platinum wire into each of three aneurysms. I remember being in the neuro ICU and the nurses there enjoying having an interactive patient—apparently most in the neuro ICU aren't quite so awake and cognizant. I remember having a bit of headache for which they offered me some Tylenol, which didn't quite cut it, so they gave me Vicodin. I remember needing to pee, which given my mobility presented a bit of a quandary as nothing about my glass-walled room's toilet was private, thus a well-placed hovering mom helped to at least moderately preserve my dignity. I remember being given something to eat, which Mom helped feed a tiring me.

Days slipped past, and the next thing I remember is Christmas Eve. My husband and I held Christmas Eve dinner at our new home the first two years we were there. Per tradition from my father's Polish-Czech family, Christmas Eve was the time to gather for a multi-course meal including pea soup, pierogi, and kraut. We cracked walnuts to determine the disposition of the coming year, and all the women were dotted with honey on their forehead to keep them sweet all year long. Though we weren't overly fussy about it, the gathering was still a major to do that brought my family and my husband's family together with two tables for the adults in the dining room and one for the kids in the adjacent living room. I had broken out the inherited family silver, donned an apron, and pan-fried six dozen pierogi. I relished having been transferred the role of kitchen matriarch.

The third year—the aneurysm year—the role was stripped away, as I was allowed to do little post-surgery. There was no large family gathering. There was no formal dinner. My mother and father came over to our house to visit. I sat on the floor by our Christmas tree and scooted presents to Mom, Dad, and my husband. I'd asked for a simple gemstone bracelet, a request which my husband had obliged. There was a book and a CD and a few things from Mom and Dad. And though thankful simply to be alive, I was self-conscious when I noticed a feeling of deflation, of disappointment. What I wanted...what I'd hinted at to the point of being absolutely annoying... what even my friends had nagged my husband about... was a KitchenAid stand mixer. But there were the facts of the matter... the mixers were expensive, and we'd had a less than stellar financial year. And while the KitchenAid made my heart go pitter patter, I had told my husband that we needed to be reasonable, that I knew he would give me anything and everything in the world if he could. I didn't expect to be so disheartened when he actually listened to me.

My husband apologized that I didn't have more gifts to open and then walked away. I continued to sit on the floor and tried not to dwell on my feelings of missing Christmas magic—the surgery, the family dinner foregone, and the predicament of getting—and thereby not getting—exactly what I'd asked for. My mom crumpled up scattered wrapping paper. I heard a door open and close. The wooden floorboards squeaked as they always did as my husband walked back into the living room. He was carrying a big rectangle box and grinning. I blinked, shook my head, and smiled bemusedly. My husband put the box on the floor and said softly, "I think you know what this is." Still blinking, I cocked my head, looked at the wrapped box, and back up at him. He grinned again. I peeled off the paper to find what I'd been coveting—and it was shiny, and it was red. 

I was at once thrilled and embarrassed. "Travis...," I said in a small voice thankful yet admonishing. He raised his eyebrows slightly. "I got it on sale the day after Thanksgiving," he said. It turned out that my friend who had done the most cajoling on my behalf actually knew my husband's plan all along. The ruse was a team effort. And it worked. I wasn't allowed to do any cooking yet, so I could only admire my mixer from afar. Yet it was with my husband that I was truly impressed. My husband hadn't just given me a "thing." He had given me something to remember.

It's funny how life is so circular. This Christmas' candied ginger and coconut diamonds, lemon and cranberry trees, and spicy fruited hearts were made based on a recipe from a favorite holiday cookbook I was gifted years before I was married and mixed with the sturdy beater of the stand mixer that never leaves my kitchen counter. So many times that mixer has beaten back bad feelings as well as it beats eggs, but the best reward is the old-fashioned way of finding my way to my husband's heart through his stomach. 

This holiday season, I wish everyone joy. I wish everyone magic. I wish everyone a shiny red KitchenAid mixer. But most of all, I wish everyone love.

19 Days of Living with FMD - Day 2 - A Rare Disease in Focus

Eighteen days - that's how long FMD Chat, a fledgling nonprofit organization dedicated to those affected by the rare disease fibromuscular dysplasia, has left to raise $1,274 more dollars in order to reach its MedStartr goal of $5,000. Why do I care? Because I have fibromuscular dysplasia and FMD Chat is my organization. FMD Chat relies on social media to connect patients around the world with the peer-to-peer support that makes living with a rare disease less of an isolating experience.

What is MedStartr? MedStartr is a crowdfunding platform specifically designed for healthcare. It's like Kickstarter, but not. It has given FMD Chat access to a group of potential donors who would never otherwise know about or have interest in contributing to a small group of rare disease patients. However, many donors still remain "potential" donors and the small group of rare disease patients still need donors' support. If FMD Chat does not meet its $5,000 funding goal by Sept. 7, then the project fails and all the money raised goes back to the donors.

In order to help raise awareness of FMD Chat and its goal, I have taken up the tactics of public radio's listener support fund drives—nineteen days to meet our goal, nineteen posts to show you what it's been like, and what it continues to be like, to be me, a patient with FMD. Today, marks day two.

WARNING: it's going to get graphic. 

DON'T WANT TO SEE IT: help FMD Chat reach its goal before I get to the emergency surgery pics. 

Day 2

This is my neurologist's office.
I have been his patient since April 2008. 

At age 28, and after three days of an intense earache,

I suddenly was overcome by dizziness.

An ambulance was called.

I don't remember much of the next 24 hours.

Despite pronounced Horner's Syndrome,

the hospital doctors said that I had vertigo

and that it would go away as quickly as it had come on.

They were wrong. 

It was at home that I discovered I had 

lost my senses of pain and temperature on my right side.

Concluding that this was abnormal,

I made an appointment with my family practice doctor.

He too concluded that something was wrong

and referred me to the neurologist.

My neurologist, diagnosed an ischemic stroke.

More than four years later,

I still have deficits.

More than four years later,

I see my neurologist at least twice a year.

 

Back to Day 1

19 Days of Living with FMD - A Rare Disease in Focus

Sometimes it's hard to understand just what it means to be a patient. It's even harder to understand what it means to be a patient with a rare disease. So - I'm going to show you.

To put it very bluntly, fibromuscular dysplasia has tried to kill me many times before. I'm doing my best not to let it. FMD Chat is raising funds via MedStartr, so that the organization can grow to support more fibromuscular dysplasia patients like me around the world.

FMD has no cure, but at the very least we can care. We have 19 more days to raise $1,274 dollars, so for 19 days—or until we reach our goal—I'm going to show you what it's been like, and what it continues to be like, to be me, a patient with FMD.

WARNING: it's going to get graphic.

DON'T WANT TO SEE IT: help FMD Chat reach its goal before I get to the emergency surgery pics.

Day 1

This is my right kidney.
It is the only kidney I have.
My other kidney was removed when I was 29,
after my renal bypass failed.

Living & Giving Wholeheartedly

It's 3:30 a.m. I have not yet been asleep. There's too much to do. Too much to worry about. I am counting down the days until October when, as of right now, each day does not bear a color-coded task to be completed. Right now, the only things that have to be done in October are return from the Medicine X conference in California, meet my editorial deadline for the magazine of which I am editor, go to the dentist, and send the magazine to press. I should also probably celebrate my wedding anniversary.

The problem is that between now and then I will inevitably create at least a dozen more things for myself to do. I am responsible for at least half of my heavy load. Glutton for punishment, I fill my time with intensive responsibilities rather than enjoy the company of those I love and the things I like to do. The matter is complicated by the fact that I enjoy my self-imposed work. September will mark a year's time since I truly threw myself into the realm of healthcare and social media. It's been a whirlwind year marked by so much learning and inspiration and passion that I have admittedly somewhat lost myself. There is little to no time to spend in quiet reflection. Instead there are things to be done. Tasks to accomplish. Goals to achieve. And even before I have ticked one off my list, I've added another.

This stubborn drive is a hallmark of my character, for better and for worse. Increasingly, I am hearing the calls from friends and family to slow down, that they don't know how I do it all, that it doesn't all have to be done at once. In large, they are right. The sticking point is that I am keenly aware of working with a potentially limited clock. We all are working with a potentially limited clock. What bothers me is that my heightened awareness of this clock makes me push against it to complete the tasks that I have decided are important to me before time expires. I want to make a difference. I don't want fame or fortune. I simply want there to be some lasting indication that I was alive.

Recently, the arts-based healthcare advocate Regina Holliday told me that people are inspired by—and more willing to get behind—that which we present as our life's work. She is one who would know. She wears her heart on her sleeve in all the right ways. I tend to be a bit more quiet. I am an advocate of opportunity, plugging doggedly away for a cause that the overwhelming majority of the world couldn't give a damn less about. We in the rare disease club are, as individual diseases, fractions of populations. The rareness of our diseases not only isolates us as patients in need of care, it isolates us from the support networks that drive awareness and research of the more common diseases. Frankly, I can not imagine a world in which I will never have to spell fibromuscular dysplasia and explain it as a rare vascular disease for which there is no cure. Because I can not imagine that world, I am trying to create a world in which fibromuscular dysplasia patients like me do not feel so alone. My philosophy for creating an organization dedicated to fibromuscular dysplasia is based on my own desire to be treated with compassion and dignity, to encourage camaraderie among patients, to provide resources for caregivers, to foster interest within the medical community. I want to create the kind of environment that addresses the diagnosis from a whole patient perspective, that provides the type of care that I, as a child, teenager, young woman, and now spouse, have needed.

Nothing about advocacy is easy. To do it wholeheartedly means to give up much of oneself. What drives me onward is what I get back. It never ceases to amaze me how much our little community of patients cares about one another. Participants notice when someone has been absent for awhile. They reach out. These small communications are so important. They represent never having to be alone. They represent empathy in its truest form. I never thought that I could care so much about people whom I have never actually met. These people, these patients, these participants, are part of my heart.

So I push. I take on more than I should. I neglect the kitchen sink full of dishes and use Google translate to write an email in Italian to reach out to a rare disease group half a world away. I plan another fundraiser, contact another doctor, tweet out another link. It is all consuming. It is exhausting. It is what I both dread and desperately need. And I need you. I need for you to care. There are so many passions and tremendous causes angling for attention, and it is oh so easy to tune out the many pleas while going about one's daily routine. One says no, looks away, moves on, and assumes that someone else will step up and step in. In order to effect change—any kind of change—we must each learn to care, to engage, to give of ourselves. Whether you give to my cause or to any other, give yourself, give your heart, give your time, give your talent. Give without expectation of what you will get, but with an openness to the possibility of receiving more than you expected.

Help FMD Chat reach its $5,000 goal by Sept. 7.

Lament for the Fifth Cranial Nerve

My right side

is my dead side, 

where the nerves fried, 

but I tried 

to piece it back together.

My left side

was my bad side,

would just abide,

but my pride

forced me to be its master.

My inside

is where I hide

and confide

that i lied,

it long stopped getting better.

Posted on the occasion of a friend having also become a young stroke survivor. 
Learn more about the signs of stroke. 

Can You See Me: Invisible Disabilities and Discrimination

Margaret* is a kind woman. She is creative, loves animals and helps raise awareness of the diseases that affect her and the people she loves. In addition to sharing my diagnosis of fibromuscular dysplasia, Margaret also has pulmonary hypertension and diabetes. Her pulmonary hypertension specialist worked with her to file — and have approved — the state's official paperwork so that she could obtain a permanent handicap parking permit. 

But when Margaret went to the post office on Thursday, she experienced something that those with invisible disabilities unfortunately are all to accustomed to — discrimination. At the post office, an employee remarked that if Margaret was handicapped, she needed to use a cane. 

"I felt a mixture of emotions," Margaret said. "I was sad that someone would say that to me and make me question getting the permit in the first place. It was a hard thing for me to do to come to the decision that I needed to apply."

In Margaret's state, the qualification for obtaining a handicap parking permit fall under definition of a disabled individual. A person who has a cardiac condition with functional limitations according to American Heart Association standards is the very first item on the list of qualifications followed by those with respiratory conditions. Neither cardiac conditions nor respiratory conditions are visible — however they are no less real.

"I was sad that in some peoples' minds, one can only be be disabled if it is seen," Margaret said.

Only two of six of the state's qualifications for a handicap parking permit are those that can be readily seen and most commonly associated with disability — a person who has lost an arm or leg and does not have or cannot use an artificial limb; a person who cannot walk without the aid of another person, a walker, cane, crutches, braces, prosthetic device or a wheelchair because of the disability.

What are those with invisible disabilities to do?

Bringing about more awareness of the term invisible disability is a start, and doing this must address the public's habit of making sweeping assumptions. A person looks at another person and, based on outward appearances alone, makes a judgement. Chronic illness patients are all too familiar with variations on the frustration refrain, "But you don't look sick." Perhaps we don't. Perhaps our outside has not deteriorated like our inside. Perhaps we're out and about because it is a good day and we don't look or feel as sick as we are. The fact of the matter is that no one knows another person's full story, and no one can ascertain the full story based on appearances alone. 

When I was 25, I had triple bypass surgery. To explain the need for the surgery was enough of an endeavor — no, it wasn't heart surgery... no, it wasn't gastric bypass... yes, the doctors think I have a vascular disease... no, it's not due to a bad diet... no, it's not contagious. Even in the hospital, I was an anomaly in the vascular ward. Outside the hospital, when I finally was recovered enough to leave the house, my gauntness, slowness and bruised arms drew concerned and suspicious looks. Out to a restaurant for dinner one evening, my parents ensured I got a seat while we waited, which I did not give up when an elderly lady came in — an action that mortified my own sense of decency and, I'm sure, the others around me. But I felt as if had no choice. My need, though invisible, was great. 

I found myself in similar situations after having a stroke at age 28. I'd come home from the hospital with a walker. My foolish pride led me to leave the walker behind and instead cling to my husband's arm for balance when I had to go out in public. I was slow as molasses getting from one place to another. I went out of my way for ramps and railings to sturdy myself. It was the first time that I ever truly contemplated the Americans with Disabilities Act and realized how much more needs to be done to provide adequate accommodations. 

The vast majority of my stroke's effects were invisible, save for the drooping of my left eyelid — a physical feature those who are unfamiliar with stroke would fail to associate with its cause. My dogged persistence to appear "normal" made things harder than they had to be. Expending so much effort trying to keep up and keep my disability not only invisible but a non-issue was exhausting to the point of tears. 

That exhaustion is the risk that those with invisible disabilities face. If others do not see our disabilities as real, there is a tendency to play into the illusion. We don't want to seem a burden. We push ourselves too hard. We feel embarrassed to make use of our accommodations. And all our effort pretending — for others' benefit — that our invisible disability really isn't even there leaves us alone and suffering later when the job is done or the party is over and we overdid it because no one sees how we feel. 

Those of us with invisible disabilities must stand up for ourselves. If we can not be seen, we must at least be heard. We must speak out against discrimination and educate the public about the damage done by assumptions based on how we look. It's not about how we look. It's about who we are. And we are in this together. 

(* Indicates name has been changed.)

I Am More Than My Disease: A Project of Identity for World Rare Disease Day — Gallery

In support of World Rare Disease Day, The Afternoon Nap Society presents "I Am More Than My Disease: A Project of Identity." Participants were invited to create their own word cloud images including the name of their disease and words they use to describe themselves. The project aims to call attention to the individuals who live with disease—rare or otherwise—and their lives outside their diagnosis.  Too often we forget that patients are people and should be treated as such.

"Think Pink"
Amanda

"I Am More Than My Disease"
RAwarrior

"I Am More Than My Disease"
dazahayes

"I Am More Than My Disease"
Kelly Hayden

"I Am More Than My Disease"
Anonymous

"I Am More Than My Disease"
Hershel Keck

"I Am More Than My Disease"
Reality Gasps

"Chronic Life"
TransformYourChronic Life

"I Am More Than My Disease"
 Laura Haywood-Cory

"I Am More Than My Disease"
HurtBlogger

"I Am More Than My Disease"
Caroline

"I Am More Than My Disease—no-bandaids-please-help-us-find-a-cure"
peppermintpatti

Feb. 29, 2012

World Rare Disease Day