Rare diseases often lack a voice. Unlike more common diseases, they do not have big movements that bring the disease awareness through fundraisers, 5Ks, and spokespeople. However, sometimes, celebrities have the ability to use their name and platform to catapult little known diseases onto the stage to ask for support. Courteney Cox has recently used her fame to bring awareness to epidermolysis bullosa, EB, a rare skin condition that her friend’s child suffers from.
What is Epidermolysis bullosa?
Epidermolysis bullosa is a connective tissue condition in which the skin lacks proteins which bind it together, making the skin very fragile. This makes life very difficult because touching can result in severe blistering, both externally and internally. The delicate skin associated with the disease has earned patients the nickname “butterfly children.” This can be extremely painful and cause those with the disease to have scaring and wounds all over the body. It causes open wounds, malnutrition, stunts growth, and makes those with it prone towards skin cancer. It typically effects babies and children. There is no cure.
Courteney Cox on the Cause
Courteney Cox has taken up the cause, hoping to launch it into the spotlight to raise money, fund research, and fuel momentum towards a cure or better treatment options. She has gone on many talk shows to explain the condition, and to promote fundraisers and events. However, Cox is not alone in her efforts to use her celebrity status to carry the disease with her name. The movement is going to celebrate their third annual Rock4EB!, a festival in with celebrated celebrities will perform such as Ed Sheeran and Metallica. EB has gotten an unusual amount of celebrity support, with celebrities like Brad Pitt also speaking out, going to the EB event, and meeting people with the disease. A Hollywood Talent manager who has a son with the condition has brought many awareness to the Hollywood community and has helped get this rare disease the spotlight.
While the glitzy Hollywood events are a stark contrast to the reality of living with EB, they provide a support and recognition to a community often misunderstood. This publicity is not only able to show an acceptance of their difference, but will hopefully pave the way for a more comfortable future.
We believe rare disease patients are people, not a diagnosis. Through education, awareness and some humor, we help patients, caregivers and support persons by providing relevant and often inspirational news and stories.
Our goals are to share stories, cultivate strong community, provide the latest medical findings, connect people and pioneer production of patient worthy information. Help us attain these goals by telling us a little bit about yourself!
We’ve heard your feedback. Now, by creating a login below, you can customize your homepage to the rare conditions that are most important to you. You can also share your rare story directly through the site, so being part of our community is easier than ever!