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