Chiari ribbons are purpose to be purple. And teal blue is for syringiomylia (i never spell that right) If you have seen the one thats teal blue with a zipper it was created by TCCF and they call it the global chiari awareness ribbon. That is the only one for chiari that is not purple.
I did not know that there was a support ribbon for Chiari. I think what would be great is if when one of our friends here was having surgery, or one of thier family members we could all wear the purple ribbon in support.
Is it just a purple ribbon, or does it have a pin or something with it. Sorry I don't know, but I don't get on the computer much except to check this sight and do my homeschool research for DS.
Hope today finds you all well.
Lori, thats what bothers me the most about it is confusion! I feel like it needs to be one color so everyone knows what it stands for. I'm all for awareness any way we can get it (except bad) but this "new" teal ribbon is causing a lot of confusion. Chiari groups have been using purple ribbons for 15 years (that i'm aware of it may be longer) so why change it now? Sorry didn't mean to rant, just my opinion. Shannon
The one with the zipper means you have had the surgery, The purple is supose to be chiari awareness, the teal color is global chiari awareness. If you are going to do bracelets i would use purple unless you are planning to send them global, i wouldn't use the zipper i would probably let them ask what the cure would be and as we all kknow brain and neck surgery is the only way and sometimes it doesnt cure it all just lessens the sevarity of the symptoms. I hope this has helped if you have more questins please feel free to contact me on face book. Dawn marie Davis, Cordell, Oklahoma
U may want to use the search this community feature to see other posts on chiari and pregnancy,.....it is recommended that u have a C-section when u have chiari . The strain of natural childbirth is not good for us and will trigger symptoms.
For more replies u may want to start a new thread with the topic is Chiari hereditary.....
There is research going on as to how this possibly is being passed on, but with the # of members with other family members having the same condition it looks like it is leaning toward hereditary.
There are sites on the web where u can buy the ribbons, however, u do have to be careful as there are several sites looking to bilk monies from us and they claim it is going toward research when it is not...it is only going in their pockets....
I do have a friend that made some jewelry and I may b able to get hold of some for an upcoming walk in May...if u r still interested I will look into getting these for u and make sure it is a reputable org.
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