The Relapsing Polychondritis Awareness and Support Foundation is proud to release its first documentary, “RP The Ride of My Life,” chronicling one woman’s journey to live life with purpose while suffering from Relapsing Polychondritis (RP), a rare autoimmune disease.
“This documentary is a gift to the autoimmune and rare disease communities,” said Tom Christie, Chair/CEO of the Relapsing Polychondritis Awareness and Support Foundation and RP patient. “We hope to educate the public and rare disease community on this rare disease and empower advocacy on behalf of those affected by RP.”
Relapsing Polychondritis causes painful inflammation and destruction of cartilage that can be fatal. It can affect many parts of the body, but the most frequently affected areas include the ear, nose, trachea and joints. Because the disease is so rare affecting only three to five people per million, there is a profound lack of understanding of its causes, symptoms and treatment options. Even in the United States, where 30 million people are suffering from rare diseases, 95 percent of rare diseases do not have FDA approved drug treatment.
The patient featured in “RP The Ride of My Life” is a woman named Nancy who was living an active lifestyle but eventually began to struggle to get through the day without pain. “My journey began with a rash and soon the tests and biopsies began. Eventually the list of what it wasn’t grew and grew, and my symptoms never went away, even up until my diagnosis of Relapsing Polychondritis,” said Nancy.
Dr. Jane Buckner of the Benaroya Research Institute in Seattle is an authority on autoimmune disease and has encountered more than 250 individuals with RP over the years. According to Dr. Buckner, progress is being made in other areas of medicine that can be extended to help patients with RP live better and longer lives.
One of the leading rare disease patient advocacy organizations in the world, Global Genes, has pledged their support of the pioneering documentary. “We encourage viewers to learn about this rare disease and understand more about the challenges individuals with RP face every day,” said Nicole Boice, President and Founder of Global Genes.
To view “RP The Ride of My Life” in its entirety, please visit www.rptherideofmylife.org.
For more information about Relapsing Polychondritis or The Relapsing Polychondritis Awareness and Support Foundation, please visit www.polychondritis.org.