Prognosis

Many patients with EDS live healthy, unaffected lives. Only vascular EDS (vEDS) is associated with a shortened lifespan.[47]

Patients with chronic pain syndrome and/or severely disruptive recurrent injury and joint dislocation can be immensely challenging to treat. Some patients have been known to excel in recovery to normal daily function with good quality of life, while others remain severely disabled with continued need for medical and psychosocial adjustments.[21] Overall, disability in these patients is considered to be clinically significant, but the severity of disability varies between individuals and can be symptom-specific. It is not currently known what factors lead to severe disability and, hence, it is difficult to determine which individuals are at risk of developing chronic complications.[37]

Patients with vEDS have a mean survival age of 51 years, with patients succumbing to arterial or visceral rupture.[48] Surgery and invasive radiology are best avoided due to the risk of life-threatening complications.[47] Pregnancy in these patients is hazardous but success is well documented.

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