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. ⬇️
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 :)
@ceorl happy to be here!
@EllyOnTheGo
Welcome to CoSo!
@publickovacs thank you!
@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 💜
Very nice!
I am a social worker who worked in dialysis for 17 years! Praying that you receive a kidney transplant soon! Kudos to you for going to school to become a dialysis technician! You will be a real inspiration to the patients who are on dialysis. You will be their becon of hope! Just wondering, are you multi listed for a kidney transplant? If not I would highly recommend it. It will increase your chances of getting transplanted sooner.
@Spagesgallo1 thank you for your kind words! I really hope to make a difference one day. Yes, I am listed and I have a potential donor who is in the process of getting tested 😀
Elly, you are already making a difference, just by sharing your journey! Oh that is wonderful that you have a potential live donor! Prayers that everything goes well with your donor's testing! 😊🙏
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. ⬇️