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