EDS & CCI are a hidden illness, Cervical Cranio Instability (a complication from the EDS and falling down a flight of stairs) is a cruel disease that involves the neck not being able to support the head, when this happens the skull crushes the brainstem. This causes havoc in your body and will then slowly strip you of your normal bodily function, energy, independence & eventually your life.
“Hi my name is Nina,
“Instead of having glue holding you together, you have sticky tape holding you together! Because the EDS has effected my neck greatly, it means the muscles in my neck cannot support my head, so it is just my bones holding my head up, this is crushing my brainstem and slowly killing!”
“CCI or Cervical Cranio Instability has left me classed as disabled and taken many things away from me, including my independence and so much more. It is a cruel illness that is fatal.
“After years of fighting misdiagnosis of ignorance and accusations of hypochondria and stress, Nina finally found her true diagnosis after 8 year of suffering. She hoped to be offered the life changing spinal fusion surgery, pioneered and undertaken in the United States in several specialist EDS Neurosurgical hospital, over 3000 times, with a 95% success rate.
“Wearing a hard collar is very uncomfortable, restrictive, and hot, but it allows me to get out of bed some days and sometimes it is the only indication that i am very sick to others.