Life can be rocky for Jasmine Raskas as she navigates while suffering from Ehlers-Danlos Syndrome (EDS), a rare connective tissue disorder that causes extreme joint laxity and instability. Her joints sometimes dislocate while she sleeps.
By age 15, Raskas, now 22 years old, had to quit playing sports due to unexplainable pain and injuries. In 2014, she experienced spine complications and could not walk, and finally was diagnosed with EDS. She had spine surgery in 2015, and spent a year learning how to walk again.
Rock Climbing Helps Strengthen Muscles, Ease EDS Symptoms
Later this month Raskas heads to Paris to compete in the International Federation of Sport Paraclimbing World Championship. It’s the biggest indoor climbing event in the world with 500 climbers and 20,000 spectators.
“I discovered rock climbing by luck,” she says. “Doctors said I needed to strengthen my muscles, but I struggled to find exercise that didn’t cause pain and my joints to dislocate. I tried indoor rock climbing in January 2016. It decreases pain and strengthens my muscles just enough to keep things in place.”
She discovered the Adaptive Climbing Group, a community for people with disabilities who participate in climbing. The group accepted her as the only climber from Missouri. She qualified for the international event in Paris after placing third at a climbing event in Georgia July 22.
“Rock climbing is saving my quality of life and I consider it a true treatment option for the way I am personally affected by EDS,” Raskas says.
EDS Pain Relief through Rehabilitative Massage at Barnes-Jewish West County Hospital's Sports Therapy and Rehabilitation (STAR)
This past spring she also found help from Amy Whitelaw, massage therapist at Barnes-Jewish West County Hospital’s Sports Therapy and Rehabilitation (STAR) located inside the Washington University and Barnes-Jewish Orthopedic Center in Chesterfield. Her Washington University physiatrist John Metzler, MD, referred her to Whitelaw for relief from hip pain. Whitelaw specializes in rehabilitative massage techniques targeted at the fascial system and myofascial pain.
Fascia is a layer of continuous, connective tissue that is layered through and surrounds muscles, groups of muscles, blood vessels and nerves, binding them together. In a normal state, fascia layers and muscles glide upon each other and move without restriction, but trauma, surgery and inflammation can cause fascia to become tight and restricted, and cause pain.
Whitelaw uses several rehabilitative massage techniques. Fascial manipulation is a hands-on technique of deep friction massages targeted at deep muscular fascia to re establish sliding of fascial components for correct muscular activity and proprioception (unconscious perception of movement and spatial orientation arising from stimuli within the body itself).
Myofascial release is a hands-on technique involving applying gentle, sustained pressure into the myofascial connective tissue restrictions to eliminate pain and restore motion. Gentle pressure applied slowly allows the fascia to elongate.
“Rehabilitative massage has really helped decrease my hip pain,” says Raskas, who sees Whitelaw every two weeks for sessions.
“Hypermobility as a pain generator is markedly undiagnosed,” Whitelaw says. “Rehabilitative massage could help a lot of people in Jasmine’s situation. She is my ambassador, she can inspire many people dealing with the same pain. She inspires other patients who try to exercise, but get frustrated when they experience pain.”
“I try to focus on what I can do,” Raskas says. “I want to inspire those with different abilities to get involved with adaptive sports. I also want to raise awareness for Ehlers-Danlos Syndrome and show the world why early diagnosis and proper treatment of the condition can save lives.”
What is Ehlers-Danlos Syndrome?
According to the Ehlers-Danlos Society, Ehlers-Danlos Syndrome is a group of inherited disorders that affect connective tissues — primarily skin, joints and blood vessel walls. Connective tissue is a complex mixture of proteins and other substances that provides strength and elasticity to the underlying structures in the body.People who have Ehlers-Danlos syndrome usually have overly flexible joints and stretchy, fragile skin.
Each person’s case of Ehlers-Danlos Syndrome is unique. While there is no cure, there is treatment for symptoms, and there are preventative measures that are helpful for most.
Barnes-Jewish West County Hospital’s STAR
For more information or to schedule an appointment, call any of the three convenient STAR: Sports Therapy and Rehabilitation locations. Massage therapy sessions are available at the Creve Coeur and Chesterfield locations.
- Barnes-Jewish West County Hospital in Creve Coeur – 314-996-3050
- Washington University and Barnes-Jewish Orthopedic Center in Chesterfield– 314-514-3636
- Center for Advanced Medicine in South County – 314-286-1000