My name is Ellie Tavani and I was born with Epidermolysis Bullosa (EB) a rare genetic connective tissue disorder.
I am missing Collagen VII, the protein that adheres my skin to my body, I am wrapped daily in bandages because my skin is as fragile as a butterfly's wing. I can get hurt very easily and always have wounds on my body. Every day my parents lance blisters and help me change my bandages, so I can go to school and live my life. In spite of my disability, my spirit and excitment towards life is strong. My interests are Taylor Swift, watching football, cooking, art, piano, and hanging out with my friends. Each day, I make decisions to do some of these activities even though it may result in me getting hurt.
There is currently no cure or treatment for EB. However, my dad has run three marathons and my parents plan and host a benefit each year to raise funds and awareness to work towards a cure. In the past few years, there has been very promising research in the areas of stem cell and gene therapy that will hopefully improve the quality of my life over the next few years.