I am concerned that I have been reading that it's more than likely my children will have Chiari as well. Is there a lot of truth to this?
I feel like my doctors aren't testing me for anything else. Do I specifically ask them to test me for EDS? It's so frustrating trying to get answers because my doctors don't seem to be interested.
Emmaline said:
There is some truth to that. Opinions are all over the place with this. It depends on what caused your Chiari. I some cases, Ehlers Danlos Syndrome can be the culprit. It's a connective tissue disorder that can be linked with families genetic make up. Not all people with EDS have Chiari though.
Try to focus on educating yourself so if this is the case for you, you'll know what needs to be done. Don't expect it But educating yourself is the best thing for you and your children. You'll need to explain things to them as they pop up. Educating yourself empowers you, and you have to become your own advocate with this illness. Did I use the word "educating" enough in this paragraph? =)
Thank you Abby. I'm going to be doing a lot of research :)
Abby said:
Stacey,
Emmaline summed it up for you, but I would keep a close eye on my children looking for the symptoms. Please, do not make yourself paranoid. My NL, when I ask the question your asking, he said I may be the only one, my children have 50% of getting the EDS genes I carry. Do not beat yourself up with guilt of something you cannot help. We are here for you and know what your going through.
I know it can be genetic. My grandmother has it but none of her kids have it.( At least that they know of) My sister and I both have it. So we both just keep our eye on our children and watch for symptoms that may be part of Chiari. My daughter has been showing some signs( she is 12) but none have gotten to the point that I have taken her to her doctor. At her age its hard to tell whats from growing and whats not.