I mention that I live with the disorder Ehlers Danlos Syndrome but I know I don’t really explain it, so I thought what better time to do it, than the difficult “E” subject on the A to Z challenge.
I was initially scratching my head on what to write about, until my other half pointed out the obvious. I will make this a short post, a snippet of information, rather than the reams of stuff that does actually surround this damn illness. I don’t want to bore anyone, but it does now seem like the obvious choice for E.
The source of a lot of my factual information is the Ehlers Danlos Syndrome national charity, where the Coronation Street actress, Cherylee Houston is the patron. Cherylee also what she lives with EDS. You can find the charity online here.
EDS is a genetic connective tissue disorder. It’s caused by a defect in the protein, collagen. There are more than 30 different types of collagen and it’s the main building block of the body, providing strength and support. Examples of areas it affects are ligaments, tendons and organs. Consequently, when the collagen itself is defective, it can produce many problems throughout the body.
There are several mutations of Ehlers Danlos Syndrome and I have hypermobile type. This effects the body by;
Making joints hypermobile (lax) due to the extra elasticity of the ligaments resulting from the collagen abnormality and Pain is a common feature even when skeletal X-Rays are normal.
Other symptoms this collagen abnormality can cause are;
- Muscle fatigue that increases with use
- Early onset of advanced osteoarthritis
- Weak muscle tone
- POTS
- Risk of Mitral valve prolapse – I’ve been scanned and I’m fine
- Insensitivity to local anesthetics – I found this out when I tried to have a tooth out two weeks ago and again this week – both failed!
- Migraines
- Pregnancy complications – I had two very rapid and premature births before being diagnosed.
- Irritable bowl and other more serious gastric problems
The list goes on and on. But just imagine that this little thing called collagen, we thought was just used to plump up rich ladies lips, is actually what supports our entire bodies, and you get the idea and the possibilities of what can go wrong.
My level of problems with this are very low compared to some people who do suffer terribly. It’s a little heard of disorder and I think it deserves a little bit of airtime and awareness.
I don’t want to bang any drum or bore you to sleep, but I imagine it’s a novel post for the letter E on the A to Z challenge!
sharonsant says
This is just enough info to help people like me understand this condition. And it also makes me feel that my bit of trivia for E is rather worthless now! But another great post. π x
Rebecca Bradley says
Thanks Sharon. And your post isn’t worthless. I thought your post was kind of dreamy π
sharonsant says
actually I did too but don’t tell anyone!
D.A.Cairns says
I’d never heard of it. Thanks for bringing it to my attention. I’m sorry you are suffering.
Rebecca Bradley says
Thank you.
TaMara says
I had never heard of this before, but now I have a decent understanding of it. You’re right, it does need to be given more awareness. I’m glad that your problems aren’t as severe as they could be, but I’m sure that it’s still not pleasant.
Rebecca Bradley says
Thanks TaMara. It’s not pleasant and some days are better than others. It’s a difficult line, raising awareness and banging on about something.
Margot Kinberg says
Rebecca – You haven’t bored me at all! It sounds like an extremely challenging disease to have to live with, and now you’ve explained it, it’s easy to see how it can leave a person debilitated. Among other things it goes to show that even something we think of as more or less insignificant can be so important.
Rebecca Bradley says
Thanks Margot. It’s difficult to gauge how much people want to know. Now I just have to remember I’ve done this post and not hit people over the head with it again! π
Very Tessa Tangent says
I’d picked up a little about EDS from you and had looked it up as a result but that’s a great explanation of it and of how debilitating the condition can be. The more blogs (plus information and awareness generally) that can shed light on the lesser-publicised conditions, the better life can be for sufferers/self-managers and carers, as well as their friends and the wider community. Another great post and, yes, an unusual ‘E’. π
Rebecca Bradley says
Thank you! I worry that I’m getting close to, or crossing that line between raising awareness and annoying people!
nancyrae4 says
Excellent choice for E. Honestly, I hadn’t heard of EDS before. Thanks for sharing the details. The human body is so mysterious we all need to know as much as possible. Thanks, brave lady!
Rebecca Bradley says
Thank you Nancy. The body is indeed a complex and amazing thing. So complex, it sometimes can’t put all the pieces together properly.
Silvia Writes says
Thanks for taking the time to inform your readers. Well done post. Hopefully the medical field has more than adequate means of treating this, and things will improve somehow … if at all possible.
Best,
Silvia @ Silvia Writes
Rebecca Bradley says
Hi Silvia. Unfortunately there’s no way to treat this, just the symptoms. Our bodies just aren’t making collagen properly all the time it’s regenerating new stuff, it’s doing it wrong. Frustrating but it’s about learning to live with it and its restrictions.
kirstyes says
Hi Rebecca – I’ve been aware of EDS for a while now knowing you and others online with the condition. In fact I went to be assessed by a Rheumatologist only to be told I wasn’t hypermobile when physios have told me I definitely am. I understand this is quite a common reaction though.
Hoping your problems remain low. Take care
Rebecca Bradley says
I just wrote a really long reply to this on my phone and lost it! Will do it again from my laptop tomorrow x
kirstyes says
Oh no – hate it when that happens.
ramblingsfromtheleft says
Yikes Rebecca … this certainly was a departure from the norm A-Z challenge. Great job of explaining EDS. Sorry it plagues you, but glad you told us more about it π
t upchurch says
Oh Gawd, commiserations on the tooth thing especially, hope you’re ok!
Rebecca Bradley says
Thanks Tracey. It wasn’t fun at the time but I’m sure it’ll get sorted.
ladysknight says
Thanks for the education. EDS sounds like a big challenge to endure!
Rebecca Bradley says
I’m glad I could give just a little information. I think the biggest challenge for me now is recognising my limitations.
Villyne says
I thought that thumb thing was just a weird skill I managed to pick up as a kid. I used to be able to do it very easily with both hands, but now it’s only easy with the left and, while I can do it with the right, it hurts a bit. I never knew it had a name and that it was actually a genetic disorder. Huh.
Rebecca Bradley says
You need to have multiple other symptoms otherwise it could just be double jointed-ness, but if you have, you never know. I imagine its under diagnosed.
Villyne says
Of the symptoms you listed the only one that I really get are the migraines, but that’s probably from something different.
DL Shackleford says
Excellent job of describing EDS to make it understandable to a layman. I am glad to hear that you are not severely affected.
Wayne says
Thank you for sharing this. I hope that new treatments will emerge for yourself and the others with this syndrome. Peace and Hope. Stratoz goes AtoZ
Joanna (Lazuli Portals Trilogy) says
Thanks for this new understanding, Rebecca. I had researched POTS because a client has it and I needed to know a little about it to customise my work with him; but I knew nothing about EDS. Sometimes it seems to take such a little thing to upset our alignment and our health!
I’m glad your EDS symptoms are on the lower side of the spectrum. You have quite enough to deal with already! π