My name is Milo and I live with hypermobile Ehlers-Danlos Syndrome. Living with hEDS has given me a unique perspective and way of life. I was diagnosed with hEDS at fourteen years old and since receiving my diagnosis, I’ve dedicated a sizable portion of my time to learning about EDS, advocating for EDS, and building community connections for those living with EDS.
I have a strong passion for advocacy and helping others learn about Ehlers-Danlos Syndrome. It doesn’t matter if you have EDS, know someone who does, or you just want to learn, I love to educate anyone and everyone about EDS. I believe that education around the diverse presentations of all the types of EDS can lead to an earlier diagnosis, a better quality of life, and even preventing a life threatening complication.
Since beginning to advocate for EDS, I’ve done some pretty cool things and had some pretty cool opportunities. To save time and make sure I don’t start rambling, I’ll just write out a little list…
If you love learning, live with EDS, or just want to hang around, keep an eye out for blog posts!