Ehlers-Danlos Syndrome is a ‘hidden’ genetic connective tissue condition. I covered it in January this year but EDS Awareness Month is the right time to talk about it again. There are 7 different types. I was diagnosed with Hypermobility Ehlers-Danlos (formerly known as EDS Type 3) aged 15 by a geneticist. Features which led to diagnosis included very soft, velvety skin, which bruises easily; poor wound healing; ineffective local anaesthetic (needing 3 doses before I can’t feel pain); very hypermobile joints (being able to bend elbows backwards, knees hyper-extending when standing), muscle pain and muscle fatigue. By 15, I’d already had operations on both feet and 5 teeth removed due to overcrowding. The defect in my collagen means that some simple things that people take for granted, such as swallowing, are more difficult. It’s hard to think of an area of my body that hasn’t been affected by having Ehlers-Danlos Syndrome.
How do I manage these symptoms? Physiotherapy, getting lots of rest and having regular naps, and wearing splints all help. A medical corset helps ‘stabilise my core’ because my torso can get ‘floppy’. My chronic fatigue and muscle pain is due to EDS and Rheumatoid Disease (RA) – a ‘double whammy’. Enbrel (rheumatoid arthritis medication) and Actonel (osteoporosis treatment) have started to make a difference to my joints from the inside; hydrotherapy and physiotherapy have helped strengthen them. Pacing is my new mantra – spacing out activities to get more done rather than trying to do everything in one day.