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Principles of Injury Prevention in Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD)

Cynthia Neville, PT, DPT, WCS, BCB-PMD

November 8, 2021

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Question

What are some of the principles of injury prevention in EDS and HSD?  

Answer

Number one, pain is information. Do not ignore or push through pain in work or sport. Now, somebody without EDS, you might say, "Oh
gosh, you're cheerleading and you're doing gymnastics and you just have to push through the pain." No. We need to pay attention to what the pain is telling us. Patients with EDS should be encouraged to avoid high-impact activities, including running and jumping, contact sports. And children should be discouraged from gymnastics, ballet, and cheerleading. I know that sounds pretty extreme, but if they have true hypermobility, they will start the process of microtrauma much earlier, and it can really lead to lots of problems later on.

So they should choose an exercise with joint protection and safety in mind. Exercise that promotes balance, posture, and stability, like Tai Chi and Pilates is important.  Be cautious with yoga. Do not emphasize end-range stretching at all. Be aware that injury can happen from overstretching. I do have patients with EDS and HSD that do yoga, but they don't do it the way that non-EDS patients do. We talk about a 50 to 75% range, 50 to 75% effort, and erring on the side of not pushing or straining to hold a pose, as opposed to a non-EDS patient where we might be saying in a yoga class, push a little farther, reach a little farther.
It's really important for patients with EDS to prevent falls and burns, to be extra careful about cuts, fractures, and bruises, which
can take longer to heal and may scar poorly. Patients with EDS also need to be careful in regards to soft tissue work. Deep tissue massage can cause bruising and strain, and they can heal slowly. I've had patients tell me too, that massage therapy is excruciating and painful and they can't recover from it.

Finally, we always want to recommend good foot support. They should choose thick, flexible soles with low heels and we often recommend considering custom orthotics to really support those feet.


cynthia neville

Cynthia Neville, PT, DPT, WCS, BCB-PMD

Dr. Neville is a board-certified Women’s’ Health Clinical Specialist (WCS) and President of her consulting and education firm, Neville Know-How, Inc. She is currently providing clinical patient care as a pelvic health physical therapist and is an Associate Professor of Physical Therapy at Mayo Clinic, Jacksonville, Florida. A highlight of her career was developing the first credentialled Women’s Health Physical Therapy Residency Program in the state of Florida at Brooks Rehabilitation in Jacksonville. She has published several peer-reviewed research articles and textbook chapters. She has been practicing and teaching pelvic health physical therapy courses for over 30 years.


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