Have you heard of Ehlers-Danlos Syndrome? It is a rare condition that affects the joints, skin, and blood vessels. With fewer than 200,000 cases in the United States per year, this connective tissue disorder is often difficult to diagnose and treat. Patients who have Ehlers-Danlos Syndrome experience the discomfort of overly flexible joints that are prone to dislocation and fragile, easily bruised skin. For those who have Vascular Ehlers-Danlos Syndrome, the rupture of blood vessels and organs is a constant cause for concern. While there is no cure for this chronic condition, pain management solutions combined with physical therapy, which is beneficial to strengthen the muscles around weak joints, can help to prevent injuries and control symptoms.
Gentle strengthening: The physical therapists at South County Physical Therapy, Inc. (SCPT) have a unique understanding of Ehlers-Danlos Syndrome and how to best treat this condition. Our approach uses gentle strengthening exercises to target specific muscle groups surrounding joints. As muscles become more developed, they can help safeguard overly flexible joints, lending to a decreased risk of full and partial dislocations.
Injury prevention: Maintaining an active lifestyle is an important component of overall health and wellness; yet for those living with Ehlers-Danlos Syndrome, exercise can often prove to be a hazardous endeavor. For those who struggle with the condition, it’s important to carefully choose low-impact activities that are easy on the joints, like swimming. The Mayo Clinic suggests avoiding high-contact sports and activities that are hard on the hips and knees, like football and running. The organization also shares that steering clear of practices like chewing gum, ice, and hard foods can help to protect the jaw joint.
Support: Physical supports, such as braces and splints, can help to further stabilize joints and prevent common dislocations. Your SCPT therapist can assess your condition, gently realign joints that may be out of place, and make recommendations for the most effective products for your specific needs. Emotional encouragement can be found from family, friends and groups like The Ehlers-Danlos Society, a non-profit organization that strives to spread awareness of the condition and help patients receive proper diagnoses and enjoy a much better quality of life. Local support groups include the Central Massachusetts support group (e-mail: moc.o1516270415ohay@1516270415sdeam1516270415lartn1516270415ec1516270415), the New England EDS Support Group, which meets every three months on Sundays at Children’s Hospital Boston-Waltham, and the Rhode Island Ehlers-Danlos Syndrome Support Group, which meets monthly at the Warwick Public Library.
If you or someone you love is impacted by Ehlers-Danlos Syndrome or other connective tissue disorders, SCPT can help. Please contact SCPT for more information at 508-832-2628.