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Showing posts from 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 un…

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.











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…

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 …

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 an…