Hello! My name is Elly, I'm 31 years old and I was diagnosed with Fanconi Anemia at 9 years old. I was third in line in 2003 after Dr. John Wagner's non-radiation protocol. Along with my diagnosis came other challenges such as short stature (I'm petite standing at 4'8), hearing loss, born without thumbs, and kidney issues. ⬇️
Despite my hardships, I have a loving and supportive family along with my husband. Learning to navigate FA as adult has been both rewarding and overwhelming. Rewarding because I get to share my life story with so many people and teach others about rare diseases like FA and spread awareness. ⬇️
Overwhelming because there's a lot to stay on top of health-wise and to be extra diligent about staying as healthy as possible and stave off secondary cancers and other infections. Currently, I'm on dialysis awaiting a kidney transplant. Unfortunately this will be my third kidney transplant (third times the charm?!) I am in great spirits and hope to resolve this chapter of my life as soon as possible. ⬇️
My husband and I live in on the East Coast with our 4 "fur-babies". He works from home and I am a model, dialysis technician student and life coach. I love my job and being able to have that creativity and freedom to express myself in this way and help people. I want to show that although I've had these challenges, I can still be who I am and I want to show others that different is beautiful no matter what! You can do anything you set your mind to! Thank you for reading my story!
I'm glad you're with us Elly :)