Key insights from the survey, analyzed by a Consultant PhD Bioinformatics, include:
1. Demographics and Diagnosis:
– The majority of respondents, primarily females, were located in Canada and the USA.
– Surprisingly, over 50% of participants received a CCI diagnosis by a CCI expert.
2. Knowledge and Duration of Illness:
– 37% admitted having limited knowledge of CCI, while 55% considered themselves to have fair to expert knowledge.
– The majority of participants have battled their illnesses for over a decade.
3. Onset Triggers:
– 58% attributed their condition to head and neck injuries, while 39% linked it to Ehlers-Danlos Syndrome/Hypermobility disorder.
– Additional triggers included viral infections (32%) and Mast Cell Activation Syndrome/prolonged allergic reactions (26%).
4. Satisfaction with Medical Investigations:
– A significant 79% expressed dissatisfaction with their medical investigations.
Spine and Brain Advocate’s CCJ Patient Experience Summary, covers responses from January 1, 2021, to December 31, 2022.
Thank you for contributing to this valuable resource, and for those with updated information, please consider sharing your experiences through the survey once again. Your insights drive positive change and awareness within the global community.
To delve into more details, explore the CCJ Patient Experience Results 2022 below.
Complete the CCJ Patient Experience Survey