29 February 2012

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.

22 February 2012

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


10 February 2012

Direct from ePatients & Doctors 2.0

This May brings about Doctors 2.0 & You, the only international congress devoted to the understanding of how physicians use new technologies, web 2.0 tools, and social media to communicate with other health care professionals, patients, payers, pharmaceutical companies, and public agencies. I am excited to be a part of this conference, held in Paris, as a representative of the ePatient community and participant in a panel addressing patients' motivation to utilize online resources to find health information and connect with others in their disease community.

It is my great privilege to be among the following panelists:

Kathi Apostolidis (@kgapo) is a Voluntary Sector Consultant and a Health Commentator. She is a two-time breast cancer survivor and a believer in the power of the internet and social media, as education and connection tools in healthcare. Kathi is interested in the ethical aspects of breast cancer, health and healthcare, and she speaks, writes and blogs at http://epatientgr.wordpress.com/ about participatory medicine, patient rights, informed shared decision making, health technology assessment, social media in healthcare, e-health, innovation in healthcare, e-patients and health literacy. Κathi is actively involved with cancer patient organizations in Greece and internationally.

Larry Chu (@LarryChu) is a practicing physician who runs the Anesthesia Informatics and Media (AIM) lab at Stanford University. He is an Associate Professor of Anesthesia on the faculty of the Stanford University School of Medicine. Dr. Chu organized the Fourth World Congress on Social Media and Web 2.0 in Health, Medicine and Biomedical Research (Medicine 2.0 @ Stanford) in 2011. He is the Executive Director of Stanford Medicine X, a conference that aims to explore how emerging technologies will advance the practice of medicine, improve health, and empower patients to be active participants in their own care. When not organizing conferences, Dr. Chu studies how information technologies can be used to improve medical education and collaborates with researchers in simulation and computer science at Stanford to study how cognitive aids can improve health care outcomes. Dr. Chu also has an NIH-funded clinical research laboratory where he studies opioid analgesic tolerance and physical dependence.

Recognized by US News and World Report as one of America's Top Sports Docs, Howard Luks, MD is a Board Certified Orthopedic Surgeon who believes that humans are innately social, health is social, and that health care by nature should be social. He entered the intersection of health care and social media long before the pavement was dry. As an early adopter of Twitter (@hjluks), Dr. Luks also runs a blog, a Facebook Page, a YouTube channel and a personal site to educate, interact and engage with his patients. Aside from seeing patients in his practice, Howard serves as an External Advisory Board Member of the Mayo Clinic Center For Social Media, and has served as the Chief Medical Officer of many fledgling start ups in the health care space. Howard currently serves as a strategic advisor to physicians, hospital systems, healthcare start-ups and the orthopedic industry. He uses his voice as a physician leader in healthcare social media to actively encourage his colleagues to consider participating in the Health 2.0 movement. This passion finds him frequently speaking on social media topics as they relate to healthcare access, quality, HIT and cost transparency and the value propositions of a deep digital presence.

Len Starnes (@LenStarnes) is an internationally recognized pharma thought leader in e-business. With 14 years of experience in this field, Len led global e-business for Bayer Schering Pharma’s Primary Care business unit. Physician communities, social media policy, multi-channel marketing in Europe, Asia, and America are just some of his areas of expertise. Len was previously based in Paris as head of corporate communications for Raychem Corporation and in London with the public affairs department of the Association of the British Pharmaceutical Industry. Len is a physicist and MBA, by training, with degrees from BU, Manchester University, and UCL.

Ian Talmage is a 38-year veteran of the pharmaceutical industry. He is currently Senior Vice President of Marketing at Bayer HealthCare Pharmaceuticals, where he has held significant positions in Pharma Development, the Strategic Planning Group and Global Strategic Marketing. Prior to this, Ian has worked with a number of major Pharma organisations, including Astra, Novartis, SmithKline and Yamanouchi, and his experience embraces Strategic Planning, Partnering, Mergers and Acquisitions and Global Marketing. In addition, Ian has worked in many different geographic areas, having been based in the UK, US, Sweden, Switzerland, The Netherlands and now Germany. Being a cancer survivor has changed and influenced Ian’s perspective on how the industry must interact with patients. While receiving healthcare he gained an appreciation for the type of support and communication most beneficial to individuals impacted by disease. He became convinced about the importance of creating a dialogue with patients and patient organisations and continues to push for industry to be a central part of the conversation in supporting patients. His dedication to this perspective is part of both his professional actions and personal commitments.

Bart Brandenburg (@bartbrandenburg) is a Dutch MD who has lived, learned and worked on three continents. He has over 25 years of experience as a clinician and researcher in hospital and primary healthcare. At present, he is CMO at Medicinfo, a healthcare innovation company in Tilburg (www.medicinfo.info) and has specialized in e-health. He is in charge of Medicinfo’s knowledge center that cooperates with national and international academic institutions. Brandenburg participates in the Center for eHealth Research at the University of Twente. He is a member of the Social Media Working Group of the International Medical Informatics Association (IMIA). With two colleagues, he is cofounder of @tweetspreekuur, a free primary care service via Twitter. In 2010, this activity won him the Medicine 2.0 Maastricht Award.

Erik Jansen M.D. (@Janszoon) worked in internal medicine and pulmonology but followed his passion and chose to become a general practitioner in a small town in the south-east of the Netherlands. In 2009 he co-founded the @tweetspreekuur primary care service on Twitter, gaining him first-line hands on experience in delivering health care via social media and doing practical research at the same time. Erik is always looking for innovative ways to “hack the healthcare system” as he demonstrated in his REshape Pecha Kucha in Nijmegen. Having been a speaker at the Maastricht and Stanford Medicine 2.0 conferences, he is very much looking forward to sharing some unconventional ideas with the Doctors 2.0 & You crowd in Paris.

04 February 2012

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

On Feb. 29 patients affected by rare disease will celebrate the 5th Annual World Rare Disease Day. There are more than 7,000 rare diseases in the world today. More than 30 million Americans alone are affected. However, unlike cancer or diabetes or Alzheimer's, rare diseases are not in the general public's frame of reference. World Rare Disease Day aims not just to spread awareness of any one disease, but of all rare diseases and the advocacy that is needed in order for patients to get the care they need and deserve.

Patients with rare diseases often are highly engaged in their own healthcare. They ask questions; they push for answers; they reach out to one another. While having a rare disease and pushing for quality care can be all consuming, patients with rare diseases are first and foremost people—daughters, husbands, artists, sports fans, foodies, writers, runners, leaders, friends... 

In support of World Rare Disease Day and the people who are the patients, The Afternoon Nap Society will become host to an online gallery titled "I Am More Than My Disease: A Project of Identity." Participants are invited to create their own word cloud images that include the name of their disease and words used to describe themselves. Images submitted to The Afternoon Nap Society will be featured on the site in the week leading up to World Rare Disease Day. 

Want to participate? Here's how:

1) EXPLORE: Visit wordle.net or simply click on "Create your Own." 

2) DESCRIBE: In the large text box, fill in the name of your disease (such as Marfan syndrome, Huntington's disease, or prostate cancerone need not be a patient with a rare disease in order to participate). Continue filling in the box with words that describe you as a person or things that you like. Examples include: mom, swimmer, cook, gardener, cats or music. Wordle will treat each word as an individual word, so remember that phrases such as "I love chocolate cake" will be broken up. You may simply wish to include the words chocolate or cake. 

3) CONTINUE: Once you have filled in your disease and descriptive words, click the small button that says "Go."

4) ADJUST: On the next screen you will see your Wordle creation and will be allowed to adjust the Wordle's font, layout, colors, and more. 

5) SAVE: Once you are happy with your Wordle, click "Save to public gallery" on the bottom right side of the Wordle. You will be given an option to input a title, username, and comment. Title your Wordle "I Am More Than My Disease." Fill in a username of your choosing so that your Wordle is attributed to you. Your username need not be your actual name or any other personal identifier unless you want it to be—just make it something so that at least you know which Wordle is yours! Click "OK" when done.

6) SEND: The last screen will feature your Wordle and provide a html code in a blue box below it. Copy the code and paste it into an email to Afternoon Napper. Title your email "I Am More Than My Disease" and hit send. Wordles must be submitted by Feb. 20. 

7) ENJOY: Return to The Afternoon Nap Society during the week of Feb. 22-29 to see your Wordle and others that were created. 


What will your Wordle say? 
Wordle: Untitled

03 February 2012

Being Mindful With the Munchies, and Learning to Say No to Sugar

It has been one week and one day since I began the concerted effort to be better to my body. Using MyFitnessPal, I am tracking my food intake—an exercise that has been a true wake up call. By tracking what I'm eating, I have discovered how much I was over-eating. If one is not careful, it takes no time at all to rack up 2,000 calories in a day much less 1,500 or less, which is my target. I'm measuring now, paying attention to serving size. Instead of bringing the box of Reduced Fat Wheat Thins to the table as I write this, I counted out 16 of them—a serving totaling 130 calories—and snacked. Normally, I probably would have mindlessly munched hand to mouth until half the box was gone. Half the box would be 585 calories. .. as a snack. No. I get a serving.

My usual diet has never been too bad in terms of what I ate. I love fruits and vegetables, rarely drink sodas, and go easy on the meat. I'm not overly keen on fast food, though I'll absolutely admit to loving pizza and falling prey to a few chicken sandwich combos, which can be worse than a traditional burger. But most of all... most of all... I love carbs and sugars. Bread, crackers, chips, pasta, cookies, cakes, pie, candy—I want it all. What I've discovered is that carbs and sugars are like a drug for me, and having them only makes me want more of them. This realization came just as the San Francisco Chronicle featured an article about researchers argument that sugar "should be highly regulated with taxes, laws on where and to whom it can be advertised, and even age-restricted sales." While such an approach may seem extreme, I do agree that more must be done with nutrition labels to increase public awareness of sugar intake. Overall, nutrition labels are too small, too innocuous, and purposefully deceitful. Candy bars and cookies are a wonderful example. Nutrition labels are tucked under packaging flaps, and while calories are listed, they are listed per serving and only upon closer inspection does one realize that a serving is one cookie or half a candy bar. Who eats only one cookie or half a candy bar?

A problem with sugar in particular is that it's sneaky. The 170 calorie breakfast shakes I bought kick in a whopping 17 grams of sugar of the 24 grams that MyFitnessPal has set as my intake limit. The clementines that I love so much and eat two of at a time contribute 13 grams of sugar (at least it's natural) with 80 calories. The fruit and cereal snack bars I bought each have 9 grams of sugar, though only 90 calories. The oatmeal cereal itself has 9 grams and 250 calories with skim milk, but the Raisin Bran, the sneaky sneaky Raisin Bran, has 17 grams of sugar along with its 230 calories with skim milk. Consequently, I have been vastly exceeding my daily limit. The good thing is that by tracking what I'm eating, I'm learning what I'm doing right and where I need to work on improving.