Massage & Bodywork

NOVEMBER | DECEMBER 2019

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Resources Cravero, Cora et al. "Case Report: Cornelia de Lange and Ehlers-Danlos: Comorbidity of Two Rare Syndromes." BMJ Case Reports (2016). Accessed October 2019. www.ncbi.nlm.nih.gov/pmc/articles/PMC4746515. Defendi, G. L. et al. "Genetics of Ehlers-Danlos Syndrome: Background, Pathophysiology, Epidemiology." Updated September 5, 2019. Accessed October 2019. https://emedicine.medscape.com/article/943567-overview. Ehlers Danlos Society. "What Are the Ehlers-Danlos Syndromes?" Accessed October 2019. www.ehlers-danlos.com/what-is-eds. Fragoulis, George and Iain McInnes. "Hypermobility Syndromes: Marfan's, Ehlers-Danlos." Rheumatology Advisor (2019). Accessed October 2019. www.rheumatologyadvisor.com/home/decision-support-in-medicine/rheumatology/hypermobility-syndromes-marfans-ehlers-danlos. Lee, Samantha and Katryna Kofton. "What It's Like to Have a Body That's Literally Falling Apart." The Cut (January 17, 2019). Accessed October 2019. www.thecut.com/2019/01/what-its-like-to-have-ehlers-danlos-syndrome.html. Lodish, Harvey et al. "Collagen: The Fibrous Proteins of the Matrix." Molecular Cell Biology. 4th ed. (2000). Accessed October 2019. www.ncbi.nlm.nih.gov/books/NBK21582. Malfait, Fransiska et al. "The 2017 International Classification of the Ehlers–Danlos Syndromes." American Journal of Medical Genetics Part C: Seminars in Medical Genetics 175, no. 1 (March 2017): 8–26. Accessed October 2019. https://doi.org/10.1002/ajmg.c.31552. Meetze, Murray. "It's Not About 'Flexibility.'" Accessed October 2019. www.murraymeetze.com/uniquelystriped/its-not-about-flexibility. National Organization for Rare Diseases. "Ehlers Danlos Syndromes." Accessed October 2019. www.rarediseases.org/rare-diseases/ehlers-danlos-syndrome. Schwartz, Robert A. and Enrico Ceccolini. "Ehlers-Danlos Syndrome." Updated April 12, 2019. Accessed October 2019. https://emedicine.medscape.com/article/1114004-overview. Ta k e 5 a n d t r y A B M P F i v e - M i n u t e M u s c l e s a t w w w. a b m p . c o m / f i v e - m i n u t e - m u s c l e s . 41 PATHOLOGY PERSPECTIVES Effective and well-rounded care for people who live with EDS means working with a team that might include physical and/ or occupational therapists to find coping mechanisms for the activities of daily living, a psychotherapist to help with the frequent mood challenges that accompany chronic pain, and possibly even a massage therapist to help with pain, function, and self-efficacy. "I can do things 'regular' folks can do, but I may have to pay the consequences. I have to weigh my choices: if I scrub the bathtub, will I be able to do massage later today or even tomorrow? It's unlikely … so I have to choose." IMPLICATIONS FOR MASSAGE THERAPY Most people with EDS have hypermobile joints, so any bodywork that challenges range of motion must be done with respect for this problem. However, this doesn't mean we need to treat them like delicate flowers. "I need firm pressure massage. If you were to give me just light touch, I wouldn't punch you in the face—but I would want to. I might crave intense deep work. But is that what's best for me? That's where we have to be careful listeners, and work on creating a safe space for clients." Because joints tend to be loose, people with EDS may experience muscle tightness or weakness, pain, and inefficient movement. Bodywork that focuses on stress reduction and functional muscle tone may be especially helpful for people living with a genetic disorder that impacts their quality of life. "My goal is to not trigger the flight- or-fight response—that is completely counterproductive. There's a big emotional component to living with pain. I feel like part of my job is to say, 'I see you. You're not crazy. I know how painful it is. I know there are consequences to every movement.' " The guiding variables about working with clients who have EDS are not very different from those we might apply to working with any client with chronic pain problems: we listen attentively, offer validation absent of judgment, and proceed based on what we discern is in the client's best interest—with special cautions about skin health, joint stability, and cardiovascular function. EDS is a genetic disease, and as such, no "cure" currently exists, but massage therapy can be a part of an overall strategy to help cope with the challenges of this condition, which is probably more common than we know. We won't repair the genetic anomalies that interfere with healthy collagen production, but with care and education we can improve our clients' life experience. Ruth Werner is a former massage therapist, a writer, and an NCBTMB-approved continuing education provider. She wrote A Massage Therapist's Guide to Pathology (available at BooksofDiscovery.com), now in its sixth edition, which is used in massage schools worldwide. Werner is available at www.ruthwerner.com or wernerworkshops@ruthwerner.com.

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