SHSU To Host First-Of-Its-Kind Medical Conference
April 10, 2018
SHSU Media Contact: Hannah Haney
The department of Population Health at Sam Houston State University demonstrates the motto, “The measure of a Life is its Service” with their commitment to improving health and well-being. For this reason, they will be sponsoring a free mini-conference April 14 and 15 in support of the families and individuals affected by Vascular Ehlers-Danlos Syndrome (vEDS).
vEDS is one of 13 classifications of a connective tissue disorder. It is the rarest and most severe form of Ehlers-Danlos. According to the National Institutes of Health, as many as one in every 250,000 people have this disorder and many do not know they have it until they experience a tragic event. Currently, there is no known treatment or cure for vEDS.
At this time, individuals impacted by vEDS have not met another person with the same condition. They also have not had access to health professionals, such as dietitians or exercise physiologists, to work with them to improve their quality of life. SHSU’s mini-conference aims to offer support in these areas for families impacted by this condition.
“It is the first conference of its kind anywhere in the world where we are bringing genetics experts, medical experts and academic experts together with patients who have vEDS,” Daphne Fulton, lecturer and Graduate Coordinator for the Department of Population Health said. “The families can learn what is new and happening now, ask questions of medical experts who can also ask questions of each other, and the families can meet other families who experience many of the same challenges.”
One Texas family that has been active in the fight for a cure is the Dolliver family and their two-year old son, Ryan.
Ryan was diagnosed with vEDS early in his young life which puts him at a high risk for major complications due to his fragile condition. If Ryan gets an injury, it can cause heavy bleeding so their main mission is to find a cure.
“We are a family deeply concerned with the welfare and life of our little boy, Ryan. We are fighters so we can’t sit on the sidelines and wait for something to happen. We had to get in the fight. We are determined to help find a cure, a cure is the only way to end the suffering of the families dealing with vascular Ehlers-Danlos Syndrome,” the Dolliver family wrote in a statement on the Ryan’s Challenge website.
In order to gauge the success of this program, SHSU’s department of Population Health wants to limit the first conference to those living in Texas and will later branch out to other regions. SHSU and Ryan’s Challenge have partnered together in order to carry out the conference. SHSU provided the organization an intern to help raise awareness and the campus will serve as the conference location.
“My job title as an intern is to spread awareness about Ryan’s Challenge and vEDS, but it has become so much more,” senior Melanie Ramirez, Ryan’s Challenge intern said. “Being a part of the organization has made me see how to really live life to the fullest and I want to find some way to present these experiences to SHSU students.”
Ramirez and others involved in Ryan’s Challenge have been responsible for recruiting for the event.
The experts who are members of the SHSU faculty and who will participate in the conference will be Simone Camel, a dietitian, Hillary Langley, a human development specialist, Gary Oden, a cardiovascular exercise physiologist, Kevin Randall, a family life specialist, Christine Cardinal, an attorney who specializes in issues with the Americans with Disabilities Act, Linda James, an advanced practice nurse who teaches at the SHSU School of Nursing and Daphne Fulton, a specialist in health communication issues.
The experts attending are:
Peter Byers, professor of Medicine and Pathology and adjunct professor of Genome Sciences at UW.
Sherene Shalhub, a board-certified vascular surgeon at the Vascular and Endovascular Surgery Clinic at UW Medical Center.
Shaine Morris, Ryan’s Pediatric Cardiologist.
For more information about Ryan’s Challenge, visit https://ryanschallenge.org
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