Tuesday, 6 March 2012

EDS What is it

There's a lot of conditions which are whats called Invisible Illness', and EDS falls into that category. So What exactly is EDS?
EDS is Ehlers-Danlos Syndrome. Please note the Syndrome addition. Syndrome means that its going to cause problems but is Unlikely to Kill you. Another Name for this condition is Hyper-mobility Syndrome, again the Syndrome word!
Try telling some one with EDS that its not a problem as its not going to kill you and see what reaction you get..........If you said it to me there's 2 likely ways I would re-act.
1, I would close up and ignore you, or
2, and more likely if you talk about a Child with EDS that way, I will probably thump you on the nose, before walking away and ignoring you.
I have EDS, my children have EDS, we think my 2 yr old Grandson has EDS, both my parents have/Had EDS.
I do a lot of work explaining EDS to people who don't know about it. I deal with the newly diagnosed, schools, etc, trying to get people to understand what EDS is, and how it can affect peoples lives.
So back to the beginning again. What exactly is EDS? Its a genetic deformation of the Collagen producing Gene. There is NO CURE. There is only treatment and support to try to protect you from Getting worse, and if you have EDS or HMS, you will get worse, sorry.
There are quite a few forms of EDS, but I suffer from the most common, EDS III, Hyper-mobile EDS. So why was I blathering on about Hyper-mobility Syndrome? Because HMS is now considered to be a form of EDS III. So if you are Hyper-mobile and in Pain, there is a good chance that you actually have EDS.
Not all Hyper-mobiles suffer with the issues that EDS/HMS suffer, a lot of Hyper-mobiles have no issues at all, they can just do things others cant.
So what is life like for an EDS/HMS? This is generally of primary importance to someone who is having to deal with EDS/HMS.
That's a hard question to answer, as someone who has EDS has had it all their life, and this is normal for them. But lets see if I can illustrate the point a little bit for you.........When I was young, I kept complaining of pain, it was put down to growing pains, flat feet, poor posture, and laziness. But I wasn't a lazy child. I was quite an active child albeit somewhat clumsy. I played Hockey, the love of my life next to reading. One day in a Hockey Match I stuck my foot in a Rabbit Hole, at full sprint. Obviously I went head over tails, and had a sore foot. I played the rest of the game. (We won, we always did, hehehe), The next morning, my foot was the size of a balloon, and so very painful, the sheet was hurting my Big toe. I got taken to the local Cottage Hospital, where they said I had sprained my ankle, and I had my foot strapped for 2 weeks to stop me being on the Hockey pitch. Quite a few years later, we discovered I had also fractured one of the bones in my big toe. If you have ever broken a bone you will know how painful it is, yet I played a Hockey match on it, and 2 weeks later was back on the Hockey pitch. So how come they missed the broken toe? Simply because my pain thresholds, and any EDS'er will say the same, my Pain Thresholds are very high. I am used to pain. I have had pain all my life. If I was to walk down the street, I would go over on my ankle about 5 times in a mile. If someone who wasn't EDS was to go over on their ankle, they would generally speaking being going to the Doctors the next day with a sprained ankle, and get told to rest, etc. Pain is Normal for us. Its part of our lives, and we ignore it, as most of us have been told at some point or another that its all in our heads, we're making it up, we are attention seeking, etc. and that's from the Doctors we trust to help us when we are in pain.
Why have so few people ever heard of EDS? Mainly because it was only discovered as an actual condition in 1962. It was only through the work of 2 doctors, Ehlers, and Danlos, that EDS was recognised as a genuine condition. That was 6 yrs before I was born. No wonder people didn't know about it, when I was younger.
Working with Blogger becomes quite tricky at this point. I don't want this to be a thesis on EDS. I want it to be something someone can come to with out registering, or jumping through hoops. I want you to be able to pop in and read the bit you need to know about, then be able to come back later and read another bit. I want this to be a resource for a newly diagnosed EDS'er, and for those who need to know how to treat/deal with them, in what ever capacity.
And part of it has to be about how things are dealt with in Oldham, where I live. So for now, I am going to go sort out the rest of this Blog, to make it look more attractive, to make sure links to various sites that can help are working properly, and to figure out wether I can make this introduction a permanent sticky, so it will always be on top, the first thing you see when you come back.
If you have questions I check my Blogs several times a day. if you dont have a blog, just leave a comment, and then check back later, where I will always respond.

Gentle Hugs,



No comments: