Ehlers Danlos Syndrome
Info for Healthcare Providers

WHAT IS IT?

 

An inherited connective tissue disorder where a gene mutation creates weakened collagen throughout the body. Collagen is a building block of several different systems throughout the body: musculoskeletal, neurological, gastrointestinal, and cardiovascular. This can cause a number of different symptoms with a wide variety of presentation between people

Possible Symptoms

 

Musculoskeletal: pain, dislocations, muscle tightness, poor posture, headaches, chronic fatigue

Cardiovascular: lightheadedness, dizziness, poor

endurance, fainting, referred heart pain

Gastrointestinal: constipation, IBS, issues with eating GERD, bloating

Neurological: poor balance, poor coordination, increased pain perception

Other: easy bruising, skin hyperextensibility, poor immune system, anxiety, depression, issues sleeping

​Considerations for Healthcare Providers

  • Every doctor plays a role in the patient’s care

  • Treatment may require trial and error to find what works best

  • Follow up and communication between appointments is key

  • Difficulty with anesthesia and pain medication

  • Patients may not look like there is an issue but their pain is real

Modifications for Patients
 
  • If the healthcare provider is not familiar with EDS, you may need to educate healthcare professionals on EDS

  • Be prepared with documentation of your symptoms with context, medications and any lab reports (MRI, X-ray, blood work)

  • Seek specialist referrals for doctors familiar with EDS