Emily’s Quality of Life Journey

Hey Friends & Fam,

I am Emily. I have a rare genetic connective tissue disorder called Hypermobile Ehler’s Danlos Syndrome with Vascular like tendencies. I have struggled with chronic health issues from birth. I am now 35, on Palliative care, fully disabled & unstable. I was not properly diagnosed until the age of 32. I’m trying to get to specialist who understand my condition. I have sought treatment & now could use some help. I’m currently getting to the correct specialists, but traveling for care, getting there, staying in hotels has depleted me. My body is now struggling as well from misdiagnosis and lack of care!

Also, insurance does not cover a lot of things! There are treatments available to help me to have a better quality of life. A lot of those are going to be surgeries & rehabilitation after. Unfortunately, with Ehler’s Danlos, one has to travel to different places. It’s not a one stop thing. We have to travel to the specialist that deal with each specific body part who know about hEDS/vEDS. If you can please help me, I would be so very appreciative. If not, pass this on, send up prayers, or good vibes, whatever you believe in my friends.

I will keep updates & if I’m unable my mom can provide them. Thank you for taking the time to read this. Well wishes to you and yours.

Emily