My daughter's surgery is in Two weeks - We've told our family and have started to tell friends.
My daughter came home stating that there is a girl in the grade behind her that has chiari. She was diagnosed 3 weeks ago (same as my daughter) and is currently not allowed to participate in gym class because of her headaches. I've asked my girls to talk to her (my middle daughter is her friend) and let her know that we are thinking of her and if her parents needed to talk that we'd be more than happy to talk about this too.
So that is one, and now the other is a HS friend of mine told me this morning that her SON has chiari too - I've emailed her to get more info on how he is and what they are doing -
Strange, small world.
Same here… I told a friend who of course blabbed to the world lol but she came to me and a sister if a friend of hers has it and my 13 year old daughter told me one of her old friends have it also. The world gets small if you’re sick or pregnant. Best wishes to your baby, I’ll be thinking of y’all.
When I was first diagnosed I found out my MIL's coworker had this too! Later a girl my husband works with was diagnosed and then a guy I used to work with found out his son has it. At first I thought that was strange being in a small town but then I thought about it and if there are approximately 20,000 people in my town then statistically about 20 people should be afflicted. Plus once you become aware of something you tend to encounter it more.
Good luck to your daughter!
You are so right. We live in a small town about 2500 people. Statistically there are two people with Chiari. Putting it in perspective makes sense, but it was a shock to me :-). Especially since this other girl was just diagnosed as well.
We go to Gillette Children's in St. Paul - I'm not sure where this other girl goes. I did however let the guidance counselor know that it was OK to give her family my name/number if they needed someone to talk to. I figure that is a good start. :)