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Massage Today
October, 2008, Vol. 08, Issue 10

Ehlers-Danlos Syndrome (EDS)

By Ruth Werner, LMP, NCTMB

I love when readers e-mail me with suggested topics for future articles, particularly when the topic allows me to discuss how massage can help manage a condition that may not be familiar to the majority of massage therapists. The following is one such e-mail I recently received:

Dear Ms. Werner,

I have a topic for one of your future articles: I have a client that has a diagnosis of Ehlers-Danlos syndrome. She is 47 years old and was originally diagnosed with arthritis in her hips when she was a preteen. She reports she always has had trouble with her joints dislocating.

Now that she has a confirmed diagnosis of the syndrome, I am unsure how to help her. Her muscles attaching to the major joints get very tender due to trying to keep her joints from dislocating. I don't feel comfortable giving her range of motion because I don't want to dislocate a joint (and she is not comfortable with it, either) and I work very, very gently at stretching the muscles once the congestion has been broken up and flushed out and the adhesions have been loosened. How can I help her on a long-term basis?

I hope you can address this issue in one of your columns. I'm sure other massage therapists would benefit from your knowledge as it pertains to this and other connective tissue disorders.

Ehlers-Danlos Syndrome: What Is It?

Ehlers-Danlos syndrome (EDS) is one of a group of genetic connective-tissue disorders. In EDS patients, a genetic mutation (or a combination of them) causes the body to produce faulty collagen, elastin or other extracellular matrix. It's a fairly rare disease, affecting only one to two people out of 10,000. About 50,000 people in the U.S. have been diagnosed with EDS, but it occurs on a wide continuum of severity, so mild cases might not be recognized until the gene is passed on to children in a more extreme form.

What Happens?

When the genes that control connective tissue production malfunction, the result is that our fascia, tendons, bones and the scaffolding that essentially holds us together don't have appropriate strength or resilience. Consequently, joints might be hypermobile and prone to arthritis, the skin might be delicate and stretchy, and wounds tend to heal slowly and poorly. In some cases, the connective tissue of the eye may be compromised, leading to detached retina, myopia, and changes in the globular shape of the eyeball. Perhaps the most dangerous consequence of EDS is damage to the valves of the heart. Mitral valve prolapse is more common among EDS patients than in the rest of the population.

Types of EDS

EDS is a result of a variety of genetic anomalies. Up to 11 different subtypes have been identified, but they usually are grouped by a primary symptom rather than by the exact location of the genetic defect. Classic EDS shows skin that is fragile and heals slowly with excessive scar tissue. Joints are poorly supported and prone to injury. Hypermobility EDS involves a high risk of joint dislocations, pain and arthritis. Vascular EDS is a serious and extreme form. It affects the connective tissue of the blood vessels, heart and other structures, including the gastrointestinal tract. Complications with this type can include aneurysm or rupture of blood vessels. Other types of EDS are much more rare and can involve problems ranging from hyperkyphosis to easily dislocated hips to extremely loose and saggy skin.

Treatment and Massage

EDS is treated according to symptoms or related problems. Basic coping strategies include learning good movement and postural habits to preserve joint function; avoiding contact sports or activities that might stretch joints beyond a healthy range of motion; and taking special care of skin wounds.

Massage and bodywork are appropriate for people with EDS as long as the cardiovascular system is healthy and hypermobility of the joints is respected. The delicacy of the skin also might be an issue, and these patients are prone to bruising. As my correspondent experienced with her client, the muscles that cross hypermobile joints are likely to be excessively tight, as they take on the duty of joint stabilizers. Stretching joints (especially hips and shoulders) to the full extent of their range is probably not appropriate, and care should be taken for how clients are positioned on the table to avoid stressing these areas.

Massage certainly will not reprogram defective genes so connective tissue becomes stronger. However, if it is carefully applied and limitations in range of motion and skin health are respected, it can be a wonderful additional strategy to deal with the chronic joint pain and muscle spasm that frequently accompany this disorder.

For next time: The floor is open. We could look at other connective-tissue disorders related to genetic mutation, like Marfan syndrome, muscular dystrophy or osteogenesis imperfecta. Or we could pick up an entirely new topic - it all depends on what shows up in my inbox. So let me know: What's on your table?

Resources

  1. Ceccolini E. Ehlers-Danlos syndrome. WebMD. www.emedicine.com/derm/topic696.htm.
  2. Ehlers-Danlos Syndrome. Mayo Foundation for Medical Education and Research. www.mayoclinic.com/health/ehlers-danlos-syndrome/DS00706.
  3. Levy H. Ehlers-Danlos syndrome, hypermobility type. Gene Reviews. www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&partid=1279.
  4. Werner R. A Massage Therapist's Guide to Pathology. Philadelphia: Lippincott, Williams & Wilkins, 2009:158-60.
  5. What Is Ehlers-Danlos syndrome? Ehlers-Danlos Foundation. http://www.ednf.org.

Click here for previous articles by Ruth Werner, LMP, NCTMB.

 

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