5 Tips for Parenting an EDS Child

[@ehlersdanlosandi]

I forgot to mention in the video that is extremely important as a parent to be knowledgeable about EDS. It's probably obvious to most, but I figured I better bring it up. My go-to resources for good easy to understand information about EDS, are the Ehlers-Danlos Society's website: www.ehlers-danlos.com, and the book Disjointed: amzn.to/3qeA75A

[@JanustheXanus]

I think that it's more than just the parents or family members that should understand someone's EDS. A huge example of this is some of the Experiences that Daniel Browning Smith, a famous performer with hEDS, had as a child. He would bruise very easily and so many people in his life that weren't his family members were concerned that may have been abused. Daniel would often need to insist that's not the case and that his skin is just very sensitive. If a child with this symptom was very desperate for attention and people thiught the same thing, that could be very bad news given what the child might claim.

[@ehlersdanlosandi]

Excellent point!

[@shannongreenwell1278]

My mom and dad didn’t know that I have cEDS. Because like you they’d never have allowed me to do much of anything, especially if they thought I would injure myself.

[@ehlersdanlosandi]

I'm really thankful for my normal childhood! I can see how knowing early on would definitely be advantageous, but if I end up having any children myself and they have EDS too, I won't keep them from doing certain sports or activities if they really want to do it. I'll just try to help them be as safe as possible while doing them.

[@MeiseUndHerz]

Thank you! Soon I have the first meeting with the schoolteacher to talk with her about the new hEDS-diagnosis from my 8-yrs old. So I will use some points of your thoughts in this video. Thanks and greetings from germany! 💜

[@ehlersdanlosandi]

You're welcome! I hope the meeting goes well and that her teacher is receptive and understanding! I hope to someday visit Germany 🇩🇪 🥰