Chiari Online Support Group

Eds? I can't believe my kids can do this

Ok, so my son had a chiari malformation done in January and I was told by several people to check for a disorder called Eds. I was telling my kids about it and I guess while I was gone on a trip they had a look what I can do fest and sent me these pictures. First off, I told them not to be doing that stuff because it can’t be healthy but I don’t know much about eds. Is this something that is possible for them to have.

Hi! Looks very typical of a connective tissue disease. I have Marfan syndrome which has some commonalities with EDS. Check out marfan.org for a lot of good info on EDS and related disorders. They are having an online symposium right now (for another week or so) that you can probably still register for through the website. So much great info/discussions and professional speakers from the international community, as well. There truly is a wealth of info if you get a chance to check it out.
Take care

Do they have other symptoms? I don’t think those pictures seem unusual for slender kids.