EDS Awareness Month

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.

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4 thoughts on “EDS Awareness Month

  1. I hope the Enbrel continues to help. And you are right, pacing is the way to go. When I know I have a very busy day coming up, I make plans to take it easy next day.

    • Thanks Irma. Hope everything’s going ok for you at the moment. Enbrel seems to be having an effect now as the last ultrasound on my hands and wrists showed inflammation had started to do down and the bone erosions seem to have stabilised. I still have swollen, stiff fingers and a wrist effusion though (as well as painful hips and knees). However, chronic fatigue is the main issue at the moment – so pacing is essential but not always easy to do!

  2. I’d heard EDS was incredibly rare, but I wonder if it’s in-fact been under-diagnosed due to ignorance. If so, this may be getting better as I know (as in physically know, outside blogging) two people diagnosed with it now. The second one I met only last month and she was astonished when I’d heard of it!

    It’s hard enough to cope with something people have heard of and THINK they understand (RA) without having to cope with EDS and osteoporosis on top – so well done for writing a great blog on top of all that!

    • Good point – I think EDS has probably been under-diagnosed and agree it’s hard to know the true numbers of people who have it. At the same time I know it’s still considered by my doctors as a rare condition (in the UK, at least). I think one reason diagnosis is improving is increased awareness and having a character in Coronation Street (although I don’t watch it!) who happens to have EDS may be one reason for that. I wonder if medical students do more case studies on rare conditions these days? Would be interesting to find out. Whenever I’ve met student doctors in consultations have always told them lots about RA, EDS and the rest!

      Thank you for your lovely comment on the blog 🙂

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