By Reese Jones
Rare Disease Day was last month, but it’s always a good time to raise awareness about unique disorders.
Paroxysmal extreme pain disorder, or PEPD, is a little-known and discussed illness — even among people that are affected by chronic pain. Characterized by skin redness, flushing, and severe pain attacks in various parts of the body, this debilitating condition has been documented by scientific literature and only currently affects 80 individuals, according to a report by the National Library of Medicine. Like many other rare diseases, PEPD is generally thought to be caused by a genetic mutation. This condition often manifests from infancy all throughout a patient’s life, while other studies have pointed to the likely possibility of it being felt even in utero.
Rare Disease Day is internationally recognized as Feb. 28. This year, U.S. Pain Foundation had multiple pain warriors who represented the organization during February and also on the first of March for Rare Disease Day. Ambassadors representing U.S. Pain included Suzanne Stewart, Julian Phillips, and Dawn Stancliff.
Each hosted an event to raise awareness for the many Americans living with a rare disease; statistics show 1 in 20 people are affected. Stancliff hosted an information table at the National Institutes of Health in Bethesda, MD; Stewart hosted a table at The Summit in Canton, MI; and Phillips hosted a table at the Harrisburg State Building in PA.
Rare Disease Day takes place on the last day of February every year (Feb. 28 or 29 if a leap year). The objective is to raise awareness and knowledge by calling attention to rare diseases and their impact on patients’ lives. Statistics show 1 in 20 people are affected by a rare disease. Unfortunately, there is no cure for the majority of rare diseases and many go undiagnosed.
To show support, below, U.S. Pain Foundation has provided various ways to become engaged within your community or worldwide. U.S. Pain feels this day of recognition falls in line with the organization’s mission to connect, inform, empower and educate chronic pain and invisible illnesses.
Multiple pain warriors represented U.S. Pain during two important events in February: Rare Disease Day on Feb. 28 and Headache on the Hill on Feb. 13 to 14.
Headache on the Hill
On Feb. 13 to 14, U.S. Pain Foundation Advocate Katie Golden attended Headache on the Hill with members of Congress voicing the importance of appropriating funds under the Comprehensive Addition Recovery Act (CARA). Golden spoke of the importance of fully funding pain research for the National Institutes of Health under CARA alongside other patient advocates, neurologists, headache specialists, and patient caregivers.
With one in ten American suffering from a rare disease, rare is more common than most believe. And many rare diseases cause chronic pain. U.S. Pain Foundation is proud to once again partner with the National Organization for Rare Diseases (NORD) for this year’s Rare Disease Day. On Jan. 28, people living with or affected by a rare disease will join patient organizations, policymakers, caregivers, health care professionals, researchers, and industry representatives in solidarity to raise awareness for rare disease. This year’s theme is research; the slogan is “With research, possibilities are limitless.”