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. ⬇️
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! 😊🙏
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!
#introductions