Monday, September 29, 2008


I just wanted to quickly note something about my very unscientific poll.

As of today- I asked our readers how many people in their family had ACM and/or its sister conditions. 22 people (including myself) voted.

Most of us have been told that there's either no familial incidence of ACM or it's very low (10-12%) among patient populations. This never made sense to me because most everyone I know with ACM (on the blogs,, CCI) has at least 1 other family member with it.

As of today- 22 people voted. Of them, 11 people had no familial incidence (that they're aware of).... The other 11 people had AT LEAST one other family member.

I may have flunked math, but I still know that's (at least) a 50% familial incidence (here on my blog anyway)!!! One would have to ask themselves... if this isn't indicitive of the real ACM population, why am I attracting so many families with ACM?? I would tell you but the black helicopters over my house are distracting me :)

I would love to see the day that someone would look closer at this. I'm SURE that the number is even much higher than 50%. Specialists don't look closely enough at families. I understand that they don't want to put family members through testing unless they are very symptomatic, but at the same time- I believe there would be a huge benefit to knowing the true statistics (symptomatic or not). It's also beneficial to know if you or your child's brain is hanging out (symptomatic or not)- because hey, it may make you think twice about your next triple backflip off your neighbor's trampoline!

Myself and my 3 children have ACM and its sister syndromes. My mother has occipitalization of the atlas (a common bony anomally with ACM).
Recently, my (maternal) first cousin and her family spent a few days visiting our family. She is my age and has 3 children of identical age to mine. They ALL had signs and symptoms of ACM, TCS and EDS. 2 of the 3 children had Beighton scores of 9!

10-12%?? Right. And I'm the Queen of England.

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