Monday, 14 May 2012

EDS awareness month

This month is Ehlers-Danlos syndrome awareness month, a rare condition I have which has very little awareness, probably 99% of you won't have heard of it!

EDS is a defect in collagen proteins which are found in many areas of the body and so can affect tendons, ligaments, cartilage, skin, bone, blood vessels, the gut and the spine. It is caused by alterations in certain genes which therefore make the collagen weaker. As this weak collagen can affect a lot of parts of the body, EDS can cause a lot of problems. There are six main types of EDS however most people will fall into more than one category; hypermobility, classical, vascular, kyphoscoliosis, arthrochalasis, dermatosparaxis.

EDS, depending on which type, can cause: 

Loose, unstable joints that are prone to: sprain, dislocation, subluxation and hyperextension
Early onset of osteoarthritis
Easy bruising
Dysautonomia typically accompanied by Valvular heart disease (such as mitral valve prolapse, which creates an increased risk for infective endocarditis during surgery, as well as possibly progressing to a life-threatening degree of severity of the prognosis of mitral valve prolapse)
Flat feet
High and narrow palate, resulting in dental crowding
Vulnerability to chest and sinus infections
Fragile blood vessels resulting from cystic medial necrosis with tendency towards aneurysm (even abdominal aortic aneurysm)
Velvety-smooth skin which may be stretchy
Abnormal wound healing and scar formation
Low muscle tone and muscle weakness
Myalgia and arthralgia

Other complications may include:
Headaches caused by an acquired Arnold-Chiari malformation (brain disorder)
Osteopenia (low bone density)
Problems with proprioception including dysmetria
Talipes equinovarus (club foot), especially in the Vascular type
Deformities of the spine, such as: Scoliosis (curvature of the spine), Kyphosis (a thoracic hump), Tethered spinal cord syndrome, Occipitoatlantoaxial hypermobility
Functional bowel disorders (functional gastritis, irritable bowel syndrome)
Gastroparesis (partial paralysis of the stomach)
Early-onset periodontitis
Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)
Vascular skin conditions: Raynaud's phenomenon, Livedo reticularis
Blue sclera
Swan neck deformity of the fingers
Insensitivity to local anesthetics
Premature rupture of membranes during pregnancy
Platelet aggregation failure (platelets do not clump together properly)
Weak muscle tone (hypotonia) in infancy, which can delay the development of motor skills such as sitting, standing, and walking
Arterial/intestinal/uterine fragility or rupture

 Yeah that's a lot of things right! 

My personal EDS causes me loose joints (i am ridiculously flexible), easy bruising, flat feet, high palate (top of your mouth), stretchy skin, abnormal wound healing (i bleed for aaages) and scar formation (i scar SO easily and my big scar from my operation is widened), low muscle tone and weakness (i get tired really easily and have 'weak days' where just holding a glass of water my hand will shake as it's too weak to hold it), scoliosis (curved spine, i had a major operation to straighten it in august), raynauds (bad circulation causes problems in the fingers and toes, tooo long to explain in a bracket haha) and blue sclera (blue whites of the eyes). 

EDS is also very frequently misdiagnosed/undiagnosed and as it's an 'invisible illness' can cause problems with people not believing you or thinking you are over exagerating or not caring etc. Most types do not decrease life expectancy however the vascular type reduces it to 40 years, luckily I don't have the vascular type!
EDS is a serious condition which, as you can see, can cause LOTS of problems and yet even many doctors have not heard of it. We need to raise awareness and help people to get diagnosed and get treatment. I know this is a very different post to my usual but I want to make as many people aware of this as possible!

Do any of you guys have EDS, or anyone you know? Or even think you may have it after reading this! I'd be really interested to know so comment this or email me if you like! You can also email me about anything else at all, if it's about my blog or make up or whatever! My email is

If you'd like to be reaaallly lovely i'd be so grateful if any of you posted about EDS, even a simple tiny post nothing like this! Or a simple tweet or anything just to raise awareness even of one person! :)

Emily :) xxx 


  1. Ive never heard of this condition before until i came across your blog a while back. But after this post i understand about it alot more now and that it does affect alot of people out there and many do not know about it. Its very brave of you to share it with everyone and i hope more people do raise awareness for this. :)

    1. Aww thank you! thanks for reading it! :) xx

  2. Hi, I had never heard of EDS before your post but I think I have it. when I was born the nurse diagnosed me with hypermobility in every joint in my body, it is only recently that I have learnt of the symptoms that come alongside it. I went to have a tooth out and the dentist wouldn't believe that after 4 injections of local anesthetic that I could still feel pain. I also have a few of the other symptoms luckily none of the serious ones. Thank you for raising my awareness that all of my symptoms can be put together and actually has a name :). xxxx

    1. Oh really, you may have the hypermobility type! Maybe you should mention it to the doctor :) xx

  3. I've never heard of this condition before, but well done to you for raising awareness! I did have scoliosis too though, so weird when you're straightened out isn't it haha! I use my blog to raise a bit of awareness about Cystic Fibrosis, a condition I have, and it's always good to see people talking about their health issues in blog world because you don't really hear much about them in the media do you? xxx

    1. thank you :) yeah so weird to look in the mirror and be dead straight haha! Yes definitely good to see, i was actually thinking about making a bit on my blog about EDS and scoliosis :) xxx

  4. Hi Emily!
    I think its great that you've posted this; its very difficult when it comes to invisible illnesses- I have one myself which is still under investigation as noone can find specific symptoms of one illness, and it can be so frustrating when people don't believe you; I have problems with weakness i my arms/legs and the glass of water thing happens to me all the time. I don't have EDS but i do understand how hard these unseen illnesses can be.
    You're so brave for posting this and you should be proud of yourself for raising awareness.
    i hope you'ree well and i'm always here to talk,
    laura xxx

  5. Yes so frustrating, hopefully you'll find it what yours is really soon! Will make it so much easier to explain to people and for them to believe it! Thank you :) xxx