Living with CCI
How is it to live with Craniocervical Instability? This is often not visible from the outside. Patients can look and move around totally normal, but in fact they are experiencing 24/7 symptoms. It can affect patients’ lives a lot, from being disabled, not able to work to being bedbound due to symptoms. Because every patient experiences other symptoms as it differs in severity and mechanism, the way how it affects their lives is different for each patient.
We’ve asked a couple of patients suffering from CCI to talk about their life with CCI and how it affects them. By telling others how CCI can be life-changing, we hope to raise awareness and stress the importance and need for patients to get treated.
Lynn J.
Who am I? Hi, I'm Lynn, I'm 45 years old. I've been diagnosed with CCI, hEDS, Traumatic Brain Injury, Occult Tethered Cord Syndrome. I was a professional...
Alexandra S.
Who am I? Hi, I'm Alexandra, I'm 34 years old and I'm born and raised in Germany. I was diagnosed with CCI and AAI back in November 2020 by a neurosurgeon. I...
Maria F.
Who am I? Hi, I'm Maria from Venezuela. I'm 24 years old and I got diagnosed with Craniocervical and Atlantoaxial Instability last year. I studied Law at the...
Daniel I.
Who am I?Hi, my name is Daniel, I'm 23 years old and I was born and raised in Sweden. I'm currently disabled because I have been suffering from Atlanto-axial...
Ronni M.
Who am I? Hi, my name is Ronni, I'm 34 years old and I'm born and raised in the United States. I got diagnosed with Craniocervical Instability last year. I...