I know someone with it and is it scary? Sometimes. But for the most part it is fascinating. Like what they can do with their thumb or the stretchiness of the skin. It is fascinating. To know is better than not knowing. Also, I know for Oregon there is a Facebook group that video chats monthly for support and resources. Ask your doctor to see a specialist and or geneticist to get tested. For my test it was just can you do blank or do this. That was it. No blood test nothing. If you don't have EDS you may have things like Chiari Malformation and or HSD (Hypermobility Spectrum Disorder). You Are Not Alone. Trust me it is so much more common but most don't know it exists.