Basics of Understanding EDS
There are three underlying issues to understand about Ehlers Danlos Syndrome (EDS). It’s important to understand each of these to better manage EDS.
- The tissue that connects different parts of the body is called Connective Tissue. Tendons, ligaments, capsules around joints, skin are all examples of connective tissue. In EDS, this connective tissue is relatively weak; it can be stretched easily. Anything that gets stretched too much, may stay stretched (hence avoid dislocating or over stretching joints, avoid ‘party tricks’). If this connective tissue breaks, it repairs with scar tissue made up of the same connective tissue but weaker. This explains why scars in EDS are paper thin. It also explains why surgery for joints is not a good idea because the repaired joint heals with even weaker scar tissue.
- Loss of joint position sense. Our body has sensors (called receptors) in joints, tendons, muscles, ligaments, skin that continuously update the brain (‘Central Command Center’) as to the exact position of the joint. Joint position sense is also called Proprioception. Once the brain gets inputs from the joints and the rest of the body, it sends signals to other parts to act accordingly. For example, when we walk, the brain can coordinate our steps, maintain balance and prevent us from hyper-extending or over stretching our joints.
People with EDS tend to have weak joint position sense (proprioception). It is probably because of the constant damage to the joints over time. This loss of joint position sense makes people klutzy, poorly coordinated. They tend to bump in doorways, bump into furniture, drop things often. Having poor proprioception also makes them more prone to joint injuries. Poor proprioception is also seen in toddlers as they first learn how to walk. Their proprioception has not entirely developed as yet. Athletes, elderly and after joint surgery, people lose proprioception because of joint damage. Yet, another argument against joint surgery in EDS.
- People with EDS are prone to developing co-existing conditions. Physicians are not sure why this is common in EDS. The co-existing conditions are: Dysautonomia, Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Chiari Malformation, Tethered Cord Syndrome. Managing pain and loss of function in EDS means managing the family of conditions that come with it.
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