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. ⬇️
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 :)
@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! 😊🙏
@EllyOnTheGo thank you for sharing your story 💕❤️ This might inspire others to share their stories, as well ❤️
You are one hell of a warrior and I admire your perseverance and determination!! 💕
@Valkyrie_D thank you so much! This means a lot 🥰
Welcome to cmCoSo Elly! We're so happy to have you here! Thank you for sharing your story! You are a remarkable woman and an inspiration for others! 💜
And drop-dead beautiful! 💜
@LnzyHou aww thank you so much! 💜
Btw, welcome to this place! 😊🙏🏻
@LSWellesley thank you so much!
I don't mean to pry. But is this Dr. John Wagner a nephrologist at Montefiore? Just curious because I used to work with a Dr. John Wagner at Long Island Jewish Medical Center outpatient dialysis unit. If he is one and the same, he's a brilliant doctor!
@Spagesgallo1 all good! He is actually at the University of Minnesota 😊
Oh, okay! I'm so happy that you have a doctor who uses the most cutting edge technology! 😊💛
@Spagesgallo1 I appreciate that! My health has taken me on a roller coaster my whole life, I'm just so thankful I have an amazing support system!
@EllyOnTheGo
I can't even begin to imagine. But you are definitely one tough warrior! Having an amazing support team makes all of the difference in outcomes! I'm so happy that you are cared for by a wonderful support system! 😊💜
@EllyOnTheGo Good morning Elly! Nice to meet you!
@poemblaze it's nice to meet you too!
@EllyOnTheGo I have Turner's Syndrome (the second X in my chromosomes got all mangled), which can have a lot of the same stuff! Short stature (4'11 after growth hormone treatment as a teen), dyscalculia/visuospatial issues, and am infertile. Glad to know ya!
@stratkitten I'm glad to know you too! 🥰
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. ⬇️