r/CJD

Connection between CJD and head trauma/CTE
▲ 17 r/CJD

Connection between CJD and head trauma/CTE

My dad recently passed away from probable sporadic CJD at 67. He played football for many years, including high school and college, and our family has long suspected that he developed CTE from that.

I asked the National Prion Disease Pathology Surveillance Center about the connection, and they shared this article with me: https://link.springer.com/article/10.1186/s40478-018-0643-9

The study looked at 55 people with autopsy-confirmed CTE and found 2 who also had sporadic CJD. They also reported a third person identified through the National Prion Center who had both diseases.

Based on the normal incidence of sporadic prion disease, the researchers calculated that they would have expected only about 0.004 cases of prion disease in the group of 55. They calculated the probability of finding 2 or more cases by chance alone at about 9 in a million.

This was a very small study and it absolutely does not establish that CTE or head trauma causes CJD. The authors themselves said a much larger study would be needed. But they concluded that their findings provided preliminary evidence that CTE could potentially be associated with an increased risk of sporadic CJD.

One other interesting finding was that the CJD in these patients looked like typical sporadic CJD at the molecular level. In other words, the prion disease seemed to have developed on top of pre-existing CTE.

It made me really curious about the CJD community more broadly. Did your loved one have a significant history of repetitive head impacts or traumatic brain injuries? Football, hockey, boxing, military service/blast exposure, multiple concussions, serious head injuries, etc.? And if they had an autopsy, was CTE ever evaluated?

u/sweetfire009 — 11 days ago
▲ 10 r/CJD

Full Circle Moment- support

TDLR; my graduate work in infectious disease is CJD , grandma just passed from CJD, advice talking to family

Hi everyone. I never thought I’d be posting in this. I am an epidemiologist in graduate school. My research has focused so much on CJD- specifically family support and earlier identification. I literally just gave a presentation on CJD surveillance earlier this year.

My grandmother just died of CJD. It was fast, it was textbook, and it was a shock. I never thought I’d be staring at this in real life. I’m really struggling with separating what I know academically and going into academic mode, from being able to explain to my family why this was so fast. They are looking to me for closure and explanation. What has been help in explaining this to family members or non-science people? I’m still in shock and haven’t quite exited science mode.

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u/CraftyComfortable445 — 13 days ago