My name is Ellie, I'm 16 years old. I have a genetic connective tissue disease called Ehlers Danlos Syndrome. This disease affects my entire body and causes many co-morbid conditions including dysautonomia. EDS (in my case) causes daily, constant pain, legal blindness, frequent dislocations and subluxations, many food allergies and intolerances. Every day is a struggle. But I have learned to truly live despite these struggles. I have learned to turn such a dark and difficult thing as incurable disease into something great. You see, I believe that the hardest parts of life can be the most empowering. Because of my fight I have been able to create an initiative that sets my soul on fire, called The Superhero Project. We are dedicated to empowering the fights of others and inspiring the superhero within us all. We send free, handmade Superpower Bracelets worldwide to those fighting all kinds of battles. In the end, I am actually grateful for my illness because of the lessons it has taught me; such as using my voice which I now use for motivational speaking, making the most of every single moment, and how powerful something as seemingly simple as kindness and love can be.
DAILY LIVING & MOBILITY
Happy girl in a broken body
October 13 2016 05:32 AM
Blindness or Visual Impairment
Tags: DAILY LIFE , STYLE & MODELING , RELATIONSHIPS