Guest Blog – Nina Parsons

Nina Parsons

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,

“I’m not unusual, but I have a what we are led to believe is a rare condition (or rarely diagnosed is closer to the truth) called EDS and sadly i have a life threatening complication from EDS called CCI.

“I was born with EDS III or Hypermobility as its also known as. This means i have a genetic connective tissue disorder, when someone has a connective tissue disorder like EDS, to put simply the “glue” that holds your entire body together is weak and stretchy, everything is effected from your skin, to your main organs, to muscles and tendons and the list goes on.

“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.

“If I do not get surgery i will eventually be made blind, paralysed and die from the CCI. Don’t be “fooled” a lot of women smile, and look ok who suffer from EDS alone, but CCI itself is life threatening and fatal. Inside our bodies are so severely suffering and shutting down.”“The website my family runs, i hope can draw attention to my conditions, as there is very little information especially for CCI in the UK available, if people can donate to my cause and help me get better, i would like to start a CCI foundation for the UK and Europe for adults and children who were in my situation and need support.”

To find out more and to help with fundraising please visit Nina’s website