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Ehlers Danlos Syndrome

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Credit: The Ehlers-Danlos Society
Credit: Necker-Enfants Malades
Credit: Healthwatch Central Bedfordshire

Ehlers-Danlos syndromes (EDS) is a rare group of 13 conditions that affect connective tissue in the
There are several types of EDS that share these common symptoms:
 Joint hyper mobility (increased range of joint movement)
 Stretchy Skin
 Fragile Skin that may bruise or break easily
Vascular EDS: Bruising very easily due to fragile blood vessels, premature aging of hands and feet,
pain and dislocations in small joints a partial collapse of the lung can also occur, distinctive facial
features of thin nose and lips, large eyes, small ear lobes and fine hair.
Classical EDS: Fragile, stretchy skin, joint hypermobility and significant bruising and widened scarring.
Hypermobile EDS: soft, velvety stretchy skin, stretchmarks, hernias, prolapse of organs, chronic pain,
unstable joints.
Hypermobility: joint hypermobility leading to dislocations, loose unstable joints, joint pain, fatigue
and postual orthostatic tachycardia syndrome.
Kyphoscoliotic: weak muscle tone from childhood, fragile eyeballs, fragile arteries, osteoporosis and
curvature of the spine.
Arthrochalasia: Severe joint hypermobility, hip dislocations, atrophic scars, Kyphoscoliotic and skin
Dermatoparaxis: severe skin fragility, sagging, redundant skin, large hernias and easy bruising.
Peridontal EDS: Inflammation of the gums and supporting structures leading to early tooth loss
starting in childhood and early teenage years. Fragile skin with bruising in lower legs.
Living with EDS: EDS can cause chronic pain, fatigue, brain fog and mobility issues along with
migraine, motor delay and curvature of the spine. Gasto symptoms, can also feature
Pacing is very important - building rest into the day between activities to manage fatigue and pain.
Swimming, pilates and cycling can be useful to build up muscle tone and help to hold the joints in
Diagnosis, for all but hypermobility EDS a gene test can identify the type. For diagnosis of
hypermobility EDS a referral will need to be made to Rheumatology.
For further information and support see:

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