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Friday, 17 May 2013

This week's post is dedicated to some of the main symptoms that people with EDS suffer with. 

Hypermobile joints

People with EDS typically have loose joints, which means the limbs bend more than usual. This can cause floppy joints in infancy, and some affected children take longer to sit, stand and walk.
Hypermobility EDS is the most common form. The joints can sometimes be very unstable and may dislocate easily.
In other forms of EDS (such as kyphoscoliotic and arthrochalasia EDS), the looseness of the joints tends to be more disabling and dislocations may happen frequently. Joint instability may occasionally lead to osteoarthritis, but this is uncommon and occurs mostly in adults.

Abnormal skin

In all forms of EDS the skin is stretchier than normal. It easily pulls away from the body and springs back once released (this is best tested at the neck, elbows or knees).
Bruising of the skin is common in most forms of EDS because small surface blood vessels may be fragile and break easily.
In classical EDS, skin can also be extremely fragile and can split easily, especially over the forehead, knees, shins and elbows. The scars can be wide and papery.
In the very rare dermatospraxis form of EDS, the skin is severely fragile, saggy and wrinkly. There may be obvious looseness of the facial skin.
In vascular EDS, the skin is often transparent, particularly over the chest, and the veins underneath are easily visible. People with other forms of EDS may also have slightly thinner skin than usual.

Fragile body tissues

Increased stretchiness and fragility of ligaments, tendons and joint tissues makes them prone to overstretching or even tearing (ligaments are tissues that connect bones together at a joint, and tendons connect bone to muscle). Therefore, limbs may be floppy because they are not properly supported.
In vascular EDS, certain body tissues and organs are particularly delicate. Blood vessels, bowel walls and lung linings may be easily torn, causing internal bleeding. Pregnancy in women with vascular EDS can be dangerous because the womb lining is fragile.  
Information taken from the NHS website.

Jodie is only 19 years old and has Ehlers-Danlos Syndrome, Type 3 Hypermobility. However she wasn't diagnosed until she was 16 after numerous long stays in hospitals at Newcastle and London and multiple major operations. Life is not easy for Jodie or her family yet she still wishes to raise awareness for EDS as it is such a rare, cruel and debilitating disease that has seriously affected her in so many different ways. Jodie has been through so much but faces everything with a belief that she can make a difference and she is the epitome of courage in the face of adversity.

Ehlers-Danlos Syndrome (EDS) has drastically affected Jodie's life. Despite all that she has and continues to face, Jodie is a true fighter and always has a beautiful smile! Jodie feels passionately about helping others and hopes that by sharing her story with you, this will not only help to raise awareness of EDS but will also inspire you to support The Sick Children's Trust; a charity which has been there for Jodie's family during numerous long hospital stays. Please support Jodie's Journey and help us make a difference to unwell children and their families.

Information taken from the Jodie's Journey Website.


Here is how Natalia Carrasco is trying to raise awareness, she's creating daily EDS facts and posting them online for us all to share. Please see our previous blog post for more facts:

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