The most difficult form of the condition to treat, says Gottesman, is vascular EDS, in which blood vessels and internal organs are weakened and prone to sudden ruptures.
In these cases, the condition is more than disabling, it can be fatal. On average, those with vascular EDS don't live past age 40 and repeated ruptures in their blood vessels or internal organs result in emergency operations, says Dr. James Black, associate professor of surgery at Johns Hopkins.
Traditionally, surgeons have shied away from pre-emptive surgery in these cases, waiting for a rupture to strike before operating, but Black has had some success with earlier interventions with grafts.
When Sanders started the Ehlers-Danlos Syndrom Network, there was barely any research being done on this disorder, despite the fact that it affects as many as one in every 10,000 people.
"There wasn't enough awareness," Sanders says, adding that many patients go undiagnosed for decades and others, especially with more mild hypermobility, never figure out what's behind their pain.
The network, inspired by Sanders' best friend, who died of vascular EDS, is volunteer-based, so all the money raised goes directly to funding research, primarily at Johns Hopkins, she says.
"The time they have to live is way too short," Sanders says. "I want to make a difference."
For more information on Ehlers-Danlos Syndrome, see the EDS Network's Website