ZebraWatch.org, the website dedicated to public awareness of rare diseases (aka "zebra diseases"), is coming soon. In the meantime, start wearing your zebra-print ribbons and listening for hoof beats. . .
As our demographic is young adults and adults living with rare diseases, we hope to fill the void that exists between general chronic illness sites (but not specifically rare diseases) and sites for parents who have children with rare diseases. While each rare disease is (by definition) sparse, we 25 million "orphans" in the US are unbreakable if united. There are battles that only we who deal with them daily can understand; by learning with and about each other we can better fight those battles. We hope to amplify your voice along with all the others that need to be heard. We have the same hopes, dreams, and wishes that horses have, but we zebras have unique circumstances. At the same time, we deserve a source for reliable, evidence-based information--no snake oil here.
14 May, 2011 update: Keri Ulrich, RN, has officially won the 1st ZebraWatch.org "Show Your Stripes Blog Awards." Her winning website upholds the "Blog with Integrity" standards while giving insight into a rare disease called Fibromuscular Dysplasia (FMD). As co-founder of the Midwest Women�s Vascular Advocates, she created a support network for patients with non-inflammatory vascular disease. According to the NIH's Genetic and Rare Diseases Information Center, FMD is "the abnormal development or growth of cells in the walls of arteries that can cause the vessels to narrow or bulge. The carotid arteries, which pass through the neck and supply blood to the brain, are commonly affected. Arteries within the brain and kidneys can also be affected."
A June 27, 2009 article in the Wall Street Journal by Thomas M. Burton notes, "research on FMD is scant, partly because the pharmaceutical industry hasn't envisioned potentially large profits. Current treatments include blood-pressure and anti-clotting drugs, and angioplasty to open arteries." Please send your congratulations and support for Nurse Ulrich via Twitter to @FMDGirl, and see her blog profile for further contact information. At the moment, her Twitter feed notes that she is currently raising money through Facebook to help fund a major operation at Cleveland Clinic for a South African girl with intimal FMD.
Currently Needed: 1. Donation of a website by a designer; please send an e-mail with links to samples of your past work and three sentences about why you would like to participate. Full credit will be given. 2. Self-nominations of rare disease blogs for the quarterly ZebraWatch Blog Awards. Please e-mail your nomination with a link to your site and which rare disease it discusses.
This awareness campaign is not meant to replace the efforts of "The Global Genes Project," which developed the Blue Jeans Denim Ribbon campaign for genetic disorder awareness. 20 percent of rare diseases have not been identified as being due to a genetic disorder. Therefore, the zebra-print ribbon for rare disease awareness ensures that all people, including that 20 percent, who have lived with one of the 7,000 rare diseases identified in the United States have a symbol.
If you are interested in receiving more information about volunteer site opportunities in the future, or would like to have your blog considered for future Blog Carnivals, please e-mail a description of what you could offer to ZebraWatch.org or why your blog/Twitter (no Facebook, please) would be of interest to our readers. For reference as to the eventual style of our site, check out chronicbabe.com. Think young, hip, and living (as much as possible) with a rare disease.
And remember to spread the word: Zebra-print is the new black.
With love,
Zee (Content Editor, ZebraWatch.org)
"When you hear hoofbeats behind you, don't expect to see a zebra"~Dr. Theodore Woodward
"If you hear hoof beats, think horses�not zebras"~Anon.
"In making the diagnosis of the cause of illness in an individual case, calculations of probability have no meaning. The pertinent question is whether the disease is present or not."~Sotos, John G.
