Medicine X's Alliance Health ePatient Scholarships

It was at some point this past summer that my favorite massage therapist mentioned Stanford professor Abraham Verghese's book "Cutting for Stone." With her feet firmly pressed against the small of my back, she said I should check out the medical novel, loosely based on Verghese's time spent growing up in Ethiopia and his choice to become a doctor. I scratched in the title on my mental list of books to be read. My interest arose from my desire to combine medicine and literature in a work of my own one day. 

Only a month or so later, a tweet came across my feed from an anesthesiologist and professor at Stanford issuing a call for medical patients to apply for scholarships to attend the Medicine 2.0 conference. The conference would bring together the two seemingly disparate worlds of healthcare and social media. Verghese would be a keynote speaker. I took it as a sign. I applied, and to my great delight, was selected to be one of a handful of patients to join the medical innovators, social media facilitators, and creative minds coming together to dialogue about how to improve medicine as we know it. 

Going to Medicine 2.0, I already knew several interests I wanted to explore. Despite being a 30-something, I had largely resisted the whiles of Twitter and Flickr, used Facebook mainly to keep up with friends and family (even though I managed two Facebook pages for my employer), and maintained a blog more as a personal journal than as a form of outreach. I wanted to learn more about how these social media forms could better be used and, given my medical interests, how they could be tied in with healthcare. The concept seemed so foreign to me. I'd been impressed when I could find an email address for a doctor, much less actually send the doctor an email and get a response. Medicine 2.0 introduced me to the world of participatory healthcare in which doctors not only had email addresses but in which they actively sought out and interacted with patients via social media. Furthermore, these interactions were affecting in-office visits as patients used applications on their smart phones and tablets to self-track things like blood pressure or glucose readings. A virtual Pandora's box had been opened, and my world was changed. 

Given the ideas and the tools, I began to see how I could affect my own influence on healthcare through social media. Free social media platforms were the perfect means by which to share my story and connect with other patients, which for me had been nearly impossible provided the rarity of my diagnosis——intimal fibromuscular dysplasia. Thanks to the Mayo Clinic, a healthcare and social media leader, I connected with my first fellow patient on the hospital's message boards. Thanks to all that I learned and the inspiration I gained from Medicine 2.0, I began a social media-based group called FMD Chat so that fellow fibromuscular dysplasia patients could more easily connect with one another. FMD Chat incorporates Facebook, Twitter, Google Plus, and a blog to facilitate peer-to-peer interaction and spread awareness of what it means to live with the disease. To be able to provide patients with this experience and add to the dialogue has given me a sense of purpose and a way to turn a potentially devastating diagnosis into something good. 

All this goes to show that patients can, do, and will continue to influence healthcare in ways great and small——and every contribution is, in its own way, meaningful. Patients' attendance at medical conferences is therefore becoming a new normal. Those who already are activists within their disease communities should seize opportunities such as those provided by Medicine X's Alliance Health ePatient scholarships to attend conferences and learn how to best use social media to provide support; those who are not yet activists should seize such opportunities to learn how to get involved. The word activist may seem daunting to some. Let it not be. An activist is one who is active within his or her own family or local community as well as one who takes part in national organizations and shares his or her story on an international level. An activist is, at the most basic level, someone who cares. An ePatient activist is someone who cares about medicine——be their interest in technical research or caregiving, hospital design or disease awareness, advance directives or doctor-patient communication——and how medicine impacts the lives of  patients and providers.  

The application deadline for Medicine X's Alliance Health ePatient scholarships is March 15. Apply. Learn. Get involved. Make a difference. Show that you too care. 

I'm Not The Only One, The Lonely One

We feed our bodies, yet sometimes we forget to sustain our souls. My soul connects with stories—those shared without delusions of grandeur or needless hyperbole, those told with stripped-naked honesty and reflection. Seldom are there stories that move me enough as to bookmark passages and incorporate them into my life's path. I'm picky that way.

Being a patient is lonely. Being a rare disease patient is even lonelier. I've already confessed to having disease envy because those with more common diseases have so many more resources and other patients with whom to connect. But even common diseases once were misunderstood, feared, incurable, and unstudied. I am ashamed to say that I never considered this fact until recently.

I met Dr. Abraham Verghese at Stanford University where he was a keynote speaker at the Medicine 2.0 conference. I was already well into his novel "Cutting for Stone," and having just learned of his autobiographical work "My Own Country," hunted it down at Books Inc. Palo Alto prior to Verghese's talk. Since I knew that Verghese was an Indian born in Ethiopia, I was surprised when the book jacket to "My Own Country" revealed that the work was set in the Smoky Mountains of East Tennessee—a mere two hours from where I live—and chronicled Verghese's work with the regions very first AIDS patients. Intrigued, I expected to be educated about the author and the AIDS epidemic. I did not, however, expect to connect.

Verghese's story is that not just of himself but of the rise of a terrifying and incurable disease and its effects on patients who were isolated geographically in small rural communities and then ostracized by their contraction of the disease. AIDS had the "benefit" of being an epidemic and therefore subject to much research and government funding. Those of us in the rare disease community do not have this benefit. By the very nature of having a rare disease, we are still isolated and untreated. It is lonely; it is frustrating; it is seemingly unbound to change. I can only hope that the few doctors who dedicate their lives to rare disease are as intimately invested in their patients as Verghese—but more often than not, we rare disease patients have similar experiences to those early AIDS patients, as doctors are unable and/or unwilling to treat us, so we are shuffled off to doctors far away to seek specialized care.

Consequently, the patients' stories are what make "My Own Country" such a work of art and so personally relevant. We patients—particularly chronic patients—each go through a myriad of characters throughout the course of our disease. Our personal characters reflect the five stages of grief—denial, anger, bargaining, depression, and acceptance; yet, at any time we may transition backwards and forwards in these stages since disease and health in general can be mysterious and often come without a clear and predictable course of progression. Regardless of our diagnosis and whether we have come into illness through no fault of our own or by virtue of making poor health choices, we are Verghese's AIDS patients, and they are us. It is from these such patients faced with terminal illnesses for which only the symptoms may be treated and palliative care provided for comfort that we may truly learn how to live. 

"I feel like a bear that's been in hibernation, you know what I mean? I have become a person I didn't know existed inside of me. I know I can make friends. I know I'm respected after people get to know me. And my heart is so full of love to give to them who need it... Life is so precious, Abraham, and there's so many people that don't realize it. So if anything, this disease has made me take a long look at how things were before I got it and afterward. I'm more of a complete person that I ever was. I set goals for myself that I'm determined to fulfill. I am somebody. I'm happier now that I've been in a long time. I enjoy life more now... But I'm also realistic. I know that what I have is like a time bomb waiting to blow up in me and cause this terrible AIDS to begin. But I can't let it rule my life, get into my train of thought all the time and take away the best fight that my body possesses, and that is 'positive thinking.' I'm going to fight this disease with lots of laughter on account of, you know, it will boost my immune system. I've had a lot of sad times and probably a lot more to get through. But it helps having very special friends to talk to... my friends in support group are even more special to me because they know what I'm going through. They've been through it themselves. But I tell you what, Doc, there's much more to life that sitting around waiting to die." — Vickie, HIV+ patient, "My Own Country" by Abraham Verghese

FMD Chat Celebrates World Rare Disease Day With Launch of New Website

Social media has the power to bring people together. On World Rare Disease Day, FMD Chat releases its newest social media resource to help those around the world affected by fibromuscular dysplasia connect with one another including patients, their friends and family members, and healthcare providers. That new resource is fmdchat.org. 

In the rare disease community, social media may be the only way for patients to connect with others who share their diagnosis. In American, a rare disease is defined as one that affects fewer than 200,000 patients, according to the National Organization for Rare Disorders. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2,000 citizens. Overall there are more roughly 7,000 known rare diseases and disorders. Rare diseases affect an estimated 350 million people worldwide.

Fibromuscular dysplasia is a disease that affects major arteries—most often the carotid, renal, vertebral, and mesenteric arteries. The cause of FMD is unknown. Treatment is based on presentation of symptoms and is performed, when necessary, to restore blood flow. Commonly reported complications of FMD include high blood pressure, migraine-type headaches, pulsatile tinnitus, dizziness, arterial dissection, arterial aneurysm, and stroke. 

Above and all else, the complication of being an FMD patient is in finding adequate treatment and disease management within a patient's community. This difficulty results in much frustration, fear, and anger. Being a patient is hard. Being a patient who is the only patient a doctor has ever seen with a certain disease is very hard. There is no one who can identify with the challenges of being a patient—rare or otherwise—as well as another patient. Those who have more common diseases such as diabetes or cancer have the benefit of a larger affected population and thereby a higher demand for support systems, which means that within most communities there is a place to go to connect with fellow patients.

FMD patients are not afforded this same opportunity. Though recent studies indicate that FMD may well be an underdiagnosed disease affecting approximately four percent of the U.S. population, that assertion has yet to reveal the host of FMD patients that would allow for the formation of small community support groups. It was with this in mind that two FMD patients started FMD Chat, an independent, open public group run by patients and created to globally support those diagnosed with FMD. Social media allows patients to connect with one another at any time and from any place, and using familiar social media platforms such as Facebook and Twitter has allowed patients to integrate their support group participation into their everyday routine. Checking in on fellow patients, offering words of support, or asking for them becomes not a once a month or even once a week occurrence—the support resource is always available. As the global network of patients grows, its ability to provide a service also grow. Each new participant brings his or her own perspective to the group, adding to the collective body of knowledge and experience. 

FMD Chat aims to grow the patient support network with the creation of a a new website at fmdchat.org. The site is accessible to anyone with internet access—no log in or membership required—and complements FMD Chat's pre-established social media resources on Facebook and Twitter. The site will feature the work of selected FMD patient bloggers who will share their stories about living with FMD in weekly posts. The goal is not to provide medical advice. Rather the aim is to help fellow patients, friends and family members, and healthcare providers understand more about what it means to be a patient with FMD. 

We hope that by telling our stories, we will be putting to good use the lessons learned from dealing with our own challenges, be raising awareness of fibromuscular dysplasia, and be supporting our fellow patients so that they never feel that they are alone.

AfternoonNapper is the founder of FMD Chat.