On Monday, July 23, fibromuscular dysplasia patients and those who are family members, friends, and healthcare providers to FMD patients are asked to join in a global awareness event to raise the disease's profile and contribute to rare disease research.
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. Patients may be asymptomatic and remain undiagnosed; however, the disease may cause arterial stenosis, occlusion, aneurysm, and/or dissection. FMD most commonly impacts the renal and carotid arteries, though it has been identified in almost every arterial bed. FMD is considered a rare disease. In the U.S., a disease is defined as rare if it is believed to affect fewer than 200,000 Americans, according to the National Organization of Rare Disorders. A disease or disorder is defined as rare in Europe when it affects less than 1 in 2,000, states EURORDIS. The disease, like the majority of rare diseases, has no cure.
Participating in FMD Awareness Day is as involved as you want to make it!
1) Wear a necklace or bracelet of red beads. Be sure to explain to others why you are wearing the beads. Use social media (Facebook, Twitter, etc) to share a photo of you wearing your red bead necklace or bracelet and share your story about why you are wearing it — for example, you're a patient, you know someone who is a patient, you support the rare disease community. Tag all Twitter posts with #FMDaware and tag FMD Chat on all Facebook posts. Encourage others to participate! (Why red beads? The primary form of FMD — the medial form — is said to look like a "string of beads" upon angiogram. Red is the color of blood.)
2) Donate your lunch money to rare disease research. Instead of going out for lunch, pack a lunch! Contribute the $5-$15 you would have spent on lunch to the CoRDS Registry at Sanford Health. Simply mail a check to Sanford Health Foundation, 1305 W. 18th Street, Sioux Falls, SD 57117 with Rare Disease Registry on the check's memo line. Encourage others to participate! Make lunch a communal event—eat lunch with a group of friends or co-workers and make sure to share stories of how FMD has impacted participants' lives. Take a photo of your lunch and share it via social media using the tag #FMDaware on Twitter and tagging FMD Chat on Facebook.
3) Contact your local media or hospital public relations team and ask for an opportunity to share your FMD story. Be sure to emphasize the angle of what it means to live with FMD — as a patient, spouse, caregiver, etc. FMD Chat's Readings & Resources page at fmdchat.org links to several helpful articles to explain FMD from a medical standpoint.
4) Contribute to FMD Chat via MedStartr. FMD Chat has until Sept. 7, 2012 to raise $5,000. Every dollar matters!
FMD Awareness Day is solely the creation of FMD Chat. For more information, visit fmdchat.org, facebook.com/fmdchat, or twitter.com/fmdchat.
I am deeply honored to have been nominated for four WEGO Health Awards. Advocating for another Best in Show: Twitter Healthcare Collabora...
I am so very jealous. I am jealous to the point that I am angry. I am jealous to the point that I scoff in your general direction. I am jeal...
Stanford Medicine X is a catalyst for new ideas, designed to explore social media and information technology’s power to advance medical pr...
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...