Ehlers Danlos Syndrome is an umbrella term for a group of disorders effecting the connective tissue inside the body that is caused by a genetic defect, often running in families and may present in many different ways. It’s uncommon and there are many different kinds effecting certain parts of the body: eyes, teeth, heart, vascular system, vertebral column etc (check out the first resource link for a complete list). Most common symptoms include joint hypermobility, skin hyperextensibility, and tissue fragility. Anytime you read “hyper” in any medical related text always think “too much.” While “hypo” means “not enough.” Muscle pain is also common. In patients with Ehlers Danlos Syndrome, it is common for a small trip on a sidewalk to lead to a severe ankle sprain and for throwing a ball to lead to yet another shoulder dislocation. It is quite common for these patients to get used to setting their own dislocations because it is unfortunately frequent. They may also have very soft skin that is prone to bruising easily, be slow to heal from cuts, and also have severe scarring. Life expectancy can be shortened in people suffering from vascular Ehlers Danlos Syndrome due to increased extensibility of arteries and veins negatively impacting circulation, putting them at increased risk of aneurysms.
Diagnosing EDS can be quite tricky and can often go un-diagnosed. Victoria Graham, a beauty pageant winner suffers from this syndrome. She went misdiagnosed for years, suffering multiples sprains, a back injury from gymnastics, fainting spells, and chronic pain. She saw multiple doctors over 3 years and underwent 10 surgeries, stating, “They would tell me I was crazy, I was making it up, or nothing was wrong.” Luckily, her current physical therapist Steve Freeman immediately recognized what was happening from her previous history as well as her chronic intensity of pain and suggested she get genetically tested to confirm. And she wasn’t the only one with it. Seven other family members also had this genetic defect (St. Martin, 2017)! Finally having answers, and also a treatment plan, she decided to use her social platform to become an advocate for this “invisible illness,” showing up to her first pageant wearing a neck brace and ready to educate. “When I was growing up, doctors didn’t believe me because they couldn’t see the pain,” she says. “I don’t want the next generation of people to have to go through what I did (Lanquist, 2017).” Graham also states as soon as she has an issue related to her syndrome, the first person she checks in with is her trusted PT.
While Ehlers Danlos Syndromes cannot be cured, the symptoms can be managed with the help of physical therapy. Often exercising can increase pain in folks with EDS. We arm you with the knowledge and tools to scale your exercises appropriately as you’re working to improve strength without increasing pain. Pain will often ease up after the muscles are strong enough to support the joints and surrounding structures. We can help you decrease your risk of injury by working hard to improve your proprioception and stabilizing muscles. PT helps with sports/work demands by using techniques and maneuvers to protect joints, such as proper landing/loading techniques and learning how to brace with muscles in preparation for movement. By focusing on strengthening during a certain range of motion, we teach you how to protect yourself by not compromising your position and posture, preventing injuries from happening in the first place. We also focus on improving endurance, as muscles that are over-fatigued leave joints vulnerable. We work on agility, so safe movements happen automatically when you need them to, such as a loss of balance. At Bader PT we treat the person, not the diagnosis. If you are suffering from EDS or something similar and you have goals to achieve please come in and see us. We would love to help you safely reach them!
Radke, J. (2017). Rare Disease Beauty Queen. [online] Rare Disease Report. Available at: https://www.raredr.com/news/rare-disease-beauty-queen [Accessed 10 Oct. 2018].
Lanquist, L. (2017). What I Want You to Know About My Genetic Invisible Illness. [online] Self.com. Available at: https://www.self.com/story/ehlers-danlos-syndrome [Accessed 10 Oct. 2018]. https://www.self.com/story/ehlers-danlos-syndrome
St. Martin, V. (2017). A beauty queen with a crown, a sash — and an IV pole. [online] Washington Post. Available at: https://www.washingtonpost.com/local/a-beauty-queen-with-a-crown-a-sash–and-an-iv-pole/2017/04/17/3d835d3e-1f05-11e7-a0a7-8b2a45e3dc84_story.html?noredirect=on&utm_term=.577c4a8f6fa5 [Accessed 10 Oct. 2018].