Ehlers Danlos Syndrome
Info for Family & Friends
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
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
Tips to Know
Every day is different. One day they can feel good while the next the have to stay in bed all day.
This diagnosis is a journey.
EDS does not go away. Treatment is all about managing symptoms and improving quality of life.
Every daily tasks takes consideration of how they will feel
Walking through this journey requires a lot of mental processing.
Every person handles this differently.
Being realistic and optimistic is the best outlook.
Any period of inactivity may cause a set back.
It is common to have a very bad injury/pain such as an ankle sprain that will only last for a few days.