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.