What it is
Most types are inherited. Vascular EDS is rarer and more serious because blood vessels and organs can tear.
There is no cure. Physiotherapy to strengthen muscles, pain management, occupational therapy and specialist care for the rarer types help people manage day to day.
Common signs
- Very flexible joints that may dislocate
- Joint pain and clicking
- Stretchy, fragile skin that bruises easily
- Slow wound healing and wide scars
- Tiredness, dizziness and digestive problems
How it is usually diagnosed
- Examination and family history, using set criteria
- Genetic testing for most types (not hypermobile EDS)
Records worth keeping
Keeping these together makes each appointment easier, especially when you see a new doctor:
- Genetic test results
- Rheumatology or genetics letters
- Physiotherapy plans
- An emergency card for vascular EDS
Questions to ask your doctor
- Which type of EDS do I have?
- Which activities are safe for my joints?
- Should my relatives be tested?
When to get help right away
Call 112 or go to the nearest emergency department if you have:
- With vascular EDS: sudden severe pain in the chest, tummy or head: call 112 and mention the diagnosis
This page is general information. It is not a diagnosis and does not replace a doctor who knows your history. Medfold keeps your records organised; it does not interpret them.