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!
@EllyOnTheGo
I am a spoonie in autoimmune hell and a cancer patient in remission currently trying to figure out where my lymphocytes went. Finding meaning in a medically complex life is my sport.
@publickovacs I wish you well with your medical journey! It's rough out there, gotta stay positive 💜
@publickovacs thank you!