It’s May, and Ehlers Danlos Awareness Month. As I’m ridiculously busy this month I’ll not write a new post on the subject (see below one I wrote in 2013), instead I’m taking part in the HMSA’s “Do A Mile for EDS” challenge. I’ll be swimming my miles, so there won’t be very many of them but I promise they are absolutely exhausting. If you’d like to help you can visit my fundraising page here: http://uk.virginmoneygiving.com/Blaadyblah, really - every penny helps us to help people with heritable disorders of the connective tissue, I've been touched by the generosity of those who've contributed already (Thanks guys, you're all awesome).
For EDS awareness month in 2013, I put together an informal FAQ…
Q: What exactly is EDS then?A: Ehlers Danlos Syndrome is a group of connective tissue disorders caused by a defect in the way the body produces collagen. Because collagen is found throughout the body, EDS has a wide range of symptoms affecting many body parts and systems.
Q: Have you had it long?A: Yes. It is genetic. I’ve had it as long as I’ve had connective tissue and experienced symptoms all my life. The disorder was diagnosed in adulthood meaning much preventable damage had already been done. Fortunately, early identification of Hypermobility Syndromes (EDS is just one type) is now becoming more common and so patients can receive treatment and support before irreversible damage has been done.
Q: Does it hurt?A: Yes, it hurts a great deal. My joints dislocate easily and often, causing damage to the muscles, ligaments and tendons. This damage heals slowly, if it heals at all before I next damage it. Accumulative damage over the years has left me with constant pain in some areas. I have good days and bad days. On good days I am in manageable pain and can if I’m careful, slowly manage basic household tasks – most things take me three times as long as they might someone who doesn’t have to sit and rest every couple of minutes to avoid passing out. On bad days the pain and muscle spasms are unbearable. I have TENS machines, various pills and gels that help with the pain, but I am rarely if ever pain free.
Q: Is it like Arthritis?A: In some ways, yes. My joints are pretty good barometers, I often experience more pain and stiffness in the morning and evening, many of the superficial effects are the same. I have osteoarthritis in some joints caused by repeated damage. I have trouble with many of the same physical tasks, sitting, standing, walking, bottles, jars, doors, remote controls and so on. Many of the aids I use are designed for people with arthritis. People also tend to understand what arthritis means, which can make dealing with unwelcome curiosity much quicker.
Q: Do people really bother you about it?Not all curiosity is unwelcome, of course, but there are only so many times you can answer “What’ve you done to yourself then?” before you run out of time to finish your shopping. The first two or three strangers who ask personal questions may get an answer, but I have a life to lead. I am no more obliged to provide medical information to all and sundry than anyone else is! Regular annoyances include “Oh, you can walk today, then?”, “You don’t look very disabled” and my perennial favourite “Must be nice to sit at home all day”.
Q: Can you drive?A: Yes, provided I abstain from certain meds in order to do so. I had a lovely Focus (auto) which meant I could get out and about until recently, however like many other people with disabilities recent cuts mean I’ve had to let the car go as I’m not in a position to repair it, run it and eat. As a result I’m now almost housebound, which is affecting my general physical and mental health for the worse.
Q: So what are They going to do about it?A: There is no cure, no magic treatment or surgery that will fix me. I do regular physiotherapy, wear orthotic insoles and brace vulnerable joints when appropriate and use a variety of pain control techniques and medication to control some of the more unpleasant symptoms. My local hospital and surgery manage my medications and monitor my general health. Self management is key with EDS, we learn how to treat our injuries and tend to go for medical advice only with new or especially difficult problems.
Q: Will you end up in a wheelchair?A: I’m already a wheelchair user. Like most wheelchair users I have a limited ability to walk. I am not paralysed and cannot always propel my chair due to problems with my upper body. Sometimes I use my chair, other times crutches, a pole or a rollator.
Q: Is everyone with EDS like you?A: Nope. Some people experience few if any problems due to EDS, we’re all different. I don’t suffer with digestive problems to anything like the extent some of my friends do. EDS has affected my teeth terribly while others have pretty pearly whites. That said, we all have a lot in common too. Generally we all bruise easily, scar oddly and spend a lot of time tired and sore. It has been noted that many of us look alike, to the extent we’re often taken for relatives by strangers.
Q: That sounds rubbish, how come you’re so perky?A: I don’t get out much. I try very hard not to be a grump when there are other people around. I may look perky enough while chatting with an acquaintance at the shop but that does not mean I’m suddenly cured. You just learn to live with the pain and cope, some of the time. It is possible to be in pain and happy at the same time, though it isn’t always sustainable for very long. No-one sees me an hour or so later when I’m hiding under a duvet gritting my teeth and counting down the minutes until I can next take pain meds.
Q: What’s with all the Zebra stripes?A: In medical school, doctors are told that when they hear hoof beats, they should look for horses rather than zebras, meaning they should look for an everyday common or garden cause for the patient’s symptoms rather than a rare or exotic condition. In the case of EDS, the rare condition is usually the cause of what might often present as a fairly common or simple problem – and those problems can be far more serious than they initially seem. So we adopted Zebra Stripes.
Q: What can I do to help?A: Join, or donate money to The Hypermobility Syndrome Association who work tirelessly with the medical community to improve treatment and awareness of the condition, teach schools how to help affected students participate safely in PE and other activities, and run support groups all over the UK. They’re also actively involved in research into EDS and other Hypermobility Disorders and work closely with other organisations dealing with long term health conditions. If you know someone who has EDS ask them how you can help, we’re all different, and often don’t need the same assistance from one day to the next.
Q: Oh yes, last but not least… the personal questions most people want to ask…A: Yes I can, yes it does and no I will not demonstrate!
