Ehlers-Danlos Syndrome (EDS) Awareness

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May is Ehlers-Danlos Syndrome (EDS) Awareness Month. This month is designated to draw attention to a group of genetic conditions affecting the connective tissues that provide structure to blood vessels, skin, joints, and other organs and tissues. Hypermobility Spectrum Disorders (HSDs) are a set of disorders characterized by joint hypermobility.

Symptoms and conditions of EDS

EDS is a connective tissue disorder that manifests itself in a variety of ways and affects the entire body, including collagen. Because we all have collagen throughout our bodies, EDS can induce a variety of systemic disorders such as MCAS, Chiari, CCI, POTS, Dysautonomia, Gastroparesis, and more.

People with EDS and HSD also commonly experience problems throughout the body such as:

An EDS diagnosis

Most clinicians fail to diagnose EDS and hypermobility problems. The majority of people with EDS fall into categories through criteria that have nothing to do with how their symptoms present. As a result, progress is hindered and there is an increased risk of injury.

Many people with EDS fall between the gaps. For years, possibly decades, and in some cases their entire lives. EDS can also be difficult to diagnose due to a lack of current understanding and research. It takes an average of 10-12 years to be diagnosed. Because of this, it is critical to raise awareness of EDS. It may result in improved understanding and awareness, faster diagnoses, and better aid and resources for those of us who have it.

How do we treat EDS?

Have you been told that you can’t exercise due to your condition? Physical therapy services can actually be extremely beneficial for recovery whether you are homebound or not able to work. It starts with regulating your internal system so that your external systems can operate appropriately.

We are aware that many EDS clients are reluctant to exercise because they are prone to bruising, fatigue, subluxations, or other health-related concerns. However, we provide understanding and patient therapists at PARR PT who are EDS experts and thoroughly understand this illness, including it’s secondary diagnoses. Our “3-Systems” method for treatment enables a safer, more successful, and longer-lasting recovery. Because the same diagnosis can present differently, each program is individually crafted and tailored to fit the needs of every patient. We don’t believe in “one-size-fits-all” or “protocol” approaches.

Our unique therapy consists of a series of autonomic physical therapy techniques that begin to regulate how the body responds to activity and everyday tasks. Our decade of medical-graded exercise program experience allows for safe and effective exercise routines that take into account heart problems, autonomic dysfunction, and autoimmune disorders.

“Parr PT has experienced and compassionate therapists in a beautiful natural setting. Jonathan's knowledge about Ehlers-Danlos Syndrome and how it can affect one's body--and life--was a game changer for my family. We not only benefited from his caring approach, but we also learned a great deal from him. I would highly recommend Parr PT to anyone in need of physical therapy treatment!”

Next Steps

The good news is that strength and stability are now more feasible than ever thanks to developments in physical therapy and research into EDS. A program of specialized exercises for EDS is all you need to get started on your easy but safe and efficient path to strength and stability.

If you or a loved one is suffering with this illness, we are here to help! Both patients and caregivers can become exhausted as a result of EDS. The purpose for this month is to urge people to learn more about this condition and to reach out to those impacted by it.

Share this blog to spread the word and help us raise awareness!

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