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.
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