Chiari1000- A Self-Reported Illness Experience of Chiari Malformation for Adult Men and Adult Women


The present study aims to uncover differences in the illness experience of Chiari malformation I (CM) based on biological sex. With CM being far more prevalent in women and men, it is likely that the symptoms and illness experience would be different between the two groups. Recent papers have highlighted the self-reported illness experience using relatively large samples, see Fischbein et al., (2015) for review. The present study aims to gain a greater overall understanding of the illness experience from a physical, emotional, and cognitive perspective as well as obtain diagnostic and symptomatic information.


Participants completed the Chiari1000 online survey. This survey included information about the illness, illness experience and other measures of mental health and cognitive functioning. We estimate the survey took approximately 30 minutes to 1.5 hours depending on the complexity of disease. Data continues to be gathered on this platform, however the data used in this study was frozen on January 25th, 2018.


Of our sample of 1,215 adults who completed the Chiari1000 survey, 82 were male (6.75%) and 1,133 were female (93.25%). These individuals were predominantly white with over 89% of individuals identifying at least partially as white. The average age at diagnosis with CM was 31 for females and 18 for males. Men had a higher rate of comormid syringomyelia, while women had a higher rate of comorbid Raynaud’s disease, Ehlers-Danlos Syndrome and migraine headaches. Women reported more severe physical symptoms which included higher amounts of pain in the neck, shoulder, upper back, leg, foot, and face. Women also reported more more cognitive issues and depression than men.

Discussion and Conclusions

While symptom presentation is alarmingly high for both groups, women report higher levels of pain. Future research may focus on why women are more likely to have a CM.