Medical terms

CCI (Cranio cervical instablity)

CCI is a structural instability of the joint that connects the skull and neck (the craniocervical joint). This instability or imbalance can lead to a distortion of the brainstem, the upper part of the spine and the cerebellum (the little brain). Pressure on the brainstem can occur and the stress on the brainstem and the nerves disrupts the 'autonomous nervous system'. This autonomous nervous system regulates all the vital functions of the body such as heartbeat, blood pressure, breathing, digestion and so on.

It occurs especially to people with Ehlers-Danlos syndrome and other hereditary connective tissue disorders, but also in people with chronic whiplash (i.e., after a car accident).

 

AAI (Atlanto Axial Instability)

AAI is a condition in which there is abnormal displacement between the first two cervical vertebrae. The cause is a combination of decreased muscle tone in the neck muscles and weakness of the ligaments that support the atlanto axial joint. The bones are less stable and can damage the spinal cord.

This condition is progressive in nature and severely disabling. It deprives the patient of the pleasure of living and can ultimately be life-threatening. Eventually, patients are also unable or barely able to tolerate stimuli from their surroundings. The physical deterioration is such that previously completely healthy persons are dependent on continuous care and help with the most basic things 24/7.

OI (Orthostatic Intolerance)

Allergic to gravity; the problem is precisely this gravity. If you stand upright, gravity sinks more blood into the legs and less blood remains in the upper parts of the body. In healthy people, the autonomic nervous system then pulls out all kinds of tricks to get the blood flowing again through the entire body. The blood vessels contract, more blood is produced, and the heartbeat speeds up a little. But if you have orthostatic intolerance (OI), something goes wrong here. Too much blood stays in the legs and doesn't flow to the head and heart enough. 

In 2017, Mireille was diagnosed with insufficient blood return. The symptoms she experiences are so disabling that she often cannot sit upright for more than 15 minutes without feeling very ill. Another example is standing in combination with talking, as this simply requires too much energy. Fortunately, this often goes better while sitting down.  

Help Mireille pay for her operation

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