Ehlers-Danlos syndrome (EDS) refers to a group of genetic disorders that involve connective tissue. It is inherited and can affect any part of the body.
How Ehlers-Danlos syndrome (EDS) affects you?
Connective tissue is made up of proteins that provide support and structure to tissues and organs. One of these proteins is called collagen. If you have EDS, then you have a problem with the way your body makes collagen, which causes weakness in your connective tissue.
Tissues and organs that can be affected by weak connective tissue include:
- bone
- ligaments
- tendons
- blood vessels
- lymphatic vessels
- the tissue that holds the gastrointestinal tract in place.
How are ME/CFS and Ehlers-Danlos syndrome (EDS) connected?
Ehlers-Danlos syndrome (EDS) is often associated with mast cell activation syndrome (MCAS), postural orthostatic tachycardia syndrome (POTS) and ME/CFS. It may also be involved in the symptoms of acute and long COVID. If you believe you have Ehlers-Danlos syndrome (EDS), it is important to talk with your doctor, as they may need to rule this out as the cause of your symptoms. Some people with ME/CFS can also have Ehlers-Danlos syndrome (EDS).
Symptoms of Ehlers-Danlos syndrome (EDS).
The Ehlers-Danlos Society has an extensive list of symptoms that you may like to read, but some common ones that people with ME/CFS often note when connecting with Emerge Australia include:
- pain and fatigue
- joint pain, muscle pain and nerve pain
- loose or unstable joints that may lead to dislocations
- muscle tension and weakness
- weakness of the voice box
- pelvic floor weakness, bladder or vaginal wall and nerve disorders
- swallowing difficulties
- sluggish stomach and large bowel
- nausea, vomiting, acid reflux, bloating and pain
- heart rate and blood pressure regulation problems
- temperature regulation problems
- systemic inflammation related to mast cell activation