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
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)
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)
Nerve compression disorders (carpal tunnel syndrome, acroparesthesia, neuropathy)
Vascular skin conditions: Raynaud's phenomenon, Livedo reticularis
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 firstname.lastname@example.org
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