Ellie Tavani Lives Life to the Fullest, Despite Her Skin Disease
North Atlanta sophomore Ellie Tavani was born with a rare skin disease called Epidermolysis Bullosa (EB). This disease has sadly limited her in all aspects of life, but that is not stopping her from living life to the fullest. From being a lover of sports to enjoying spending time around her friends and family, Ellie Tavani is much more than the skin disease that covers her body.
The skin disease, Epidermolysis Bullosa, is a rare genetic tissue disorder that affects one out of every 20,000 births in the United States. Tavani more specifically has RDEB, as in Dystrophic EB. She was born with very little collagen-7 in her skin, which is the “glue” that holds your skin together. This means that she is very prone to getting blisters, as well as scarring and open wounds from even the slightest of friction on her skin. “It has a big impact on my life and what I am able to do physically, but I try my best to adapt and not let it affect me when I can,” Tavani said.
Ellie is not one to let that stop her, though. She enjoys hanging out with her family and friends. She even keeps up with the NFL and MLB in her free time, cheering on the New York Jets and the New York Yankees. Some of her favorite things to do include shopping at Urban Outfitters or Zara, grabbing a coffee, and going to the movies. “Depending on my mood I am thinking of a mocha or even a nice cold brew,” she said. “I think “Knives Out” was the last movie I watched and the dramatic plot twists just made it so good!”
Ellie Tavani may have been struck with a challenge that comes in the form of a rare skin disease, but she continues to prove that nothing is going to stand in her way from enjoying the things she loves the most. Ellie strives to focus on what she can do and not what she can not do. She keeps making progress in becoming more comfortable within herself, even if it is just one step at a time.
AJ Chestnut Raines • Apr 7, 2022 at 11:40 am
So good to see you thriving Ellie!! I had the privilege of meeting you when you were little- we got to do some fun science together. You were just as driven then! Keep inspiring us!
Nurse Bell • Dec 5, 2021 at 8:56 am
It is so good seeing that Ellie is doing well but I am not surprised because I knew that God loves her and he gifted her. I enjoyed she and the other classmates at her school. Unfortunately I was diagnosed with multiple sclerosis and could no longer live independently because of the symptoms. I thank God that I am doing as well as I am and for my independence increasing day by day. I just take it one day at a time. I pray that Ellie continues to do all the things that she is doing. I hope to see she and her family again some day, Nurse Bell.
Tara Bell • Dec 3, 2021 at 10:23 am
I give God the glory for his faithfulness throughout my life. I have continued to beat all odds with success. Thank you Jesus!