Ehlers-Danlos Syndrome and Hypermobility Syndromes

What is EDS?

Ehlers-Danlos Syndrome, or EDS, is an umbrella term for 13 disorders of the connective tissue. Each subtype has different characteristics and complications. The most common subtype is the hypermobile EDS.

What does it mean to be hypermobile?

Being hypermobile means that you can move your joints more than other people normally can. This has to do with your connective tissue, which can be skin, joints, collagen, being more movable or elastic. Unfortunately, your body needs joint stability in order to function normally. With hyper mobility, you are more at risk for dislocation or subluxation of joints, scoliosis and other joint disorders.

Can Physical Therapy fix EDS or hypermobility?

EDS is genetic, which means you are born with it. Physical Therapy cannot change your genes, but it can help decrease your risk for dislocations, or your joints going out of their sockets/ alignment. A specific PT program individualized to your needs can help you manage your EDS or hypermobility syndrome.

Does that mean I’ll be in PT indefinitely?

As with most life long conditions, you will most likely have episodes of care of PT throughout your life but will not be in PT all the time. You and your PT will meet and set goals for your current difficulties and challenges. When you meet those goals or are independent with your home exercise program, your PT will discharge you. It is vital that you continue your exercises at home after discharge to keep your muscles strong so that they can help keep your joints in alignment since your connective tissue will not. At some point (it may be 3 weeks, 3 months, or 3 years!), you will most likely need to return to PT for an updated, individualized program.

What should I expect in PT?

Your PT will sit down with you and discuss your questions, concerns and then assess your strength, range of motion (ROM), flexibility, stability and any difficulties you are having with your daily life. He or she will then discuss their findings with you and you will work together to set up a plan to meet attainable goals.

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