Working in healthcare, even emergency care, providers are accustomed to their department "frequent fliers" - those individuals frequently presenting to seek medical care. One subset of these repeat clientile rest in those diagnosed with Ehlers Danlos Syndrome (EDS), a connective tissue (bone, tendon, ligament, and blood vessel) disorder that causes joint hypermobility, skin hyperextensibility, and tissue fragility (The Ehlers Danlos Society, 2023) to varying degrees. Research suggests a strong genetic component to the disease, meaning there are no current cures but rather a focus on alleviating symptoms as they arise.
These patients do not have a choice but to seek care within the very system that oppresses and diminishes their experiences. The first EDS patient I encountered was seeking treatment for their sixth (6th) hip replacement within a 12-month period. As a 41-year-old... Increased joint mobility contributes to abnormal ranges of motion that cause pain and dislocations, attributing to a decreased quality of life and unbelievably limiting expectations of living; Ehlers Danlos patients can experience a dislocating joint up to once per day (Parry, 2017). Although there are varying degrees of symptomatic expression, early recognition and treatment can present novel treatment options for those affected.
For the diseases that we are able to recognize and treat early, physical therapy becomes the primary focus, but research progresses as time continues. Joint disability and dislocation lead to an inhibition in activities of daily life, generally curating a protective and preemtpive course of treatment. Families can initiate anticonvulsive, symptom-alleviating, or best-attempt premature treatment to combat EDS. With knowledge of potential future EDS struggles, a family is able to prepare for their independent course of treatment to grant a sense of autonomy to the patient.
The Ehlers Danlos Society. (2023, July 24). What is EDS?. The Ehlers Danlos Society. https://www.ehlers-danlos.com/what-is-eds/
Parry, J. (2017, January 11). Managing dislocations and subluxations in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders. Managing dislocations and subluxations in hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders – The Ehlers-Danlos Support UK. https://www.ehlers-danlos.org/information/managing-dislocations-and-subluxations-in-hypermobile-ehlers-danlos-syndrome-and-hypermobility-spectrum-disorders/
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