- Fanconi Anemia
- Interviews
Nicole's interview
How did all start?
As a child I would bruise easily, had severe nosebleeds, and was very fatigued with no color in my face and dark circles around my eyes. My blood wouldn't clot and counts were low. My bone marrow was failing, but fortunately I live in Minneapolis with great FA experts, and I was diagnosed after a chromosome breakage test. This was 1999 or 2000 I believe.
Do you already have a diagnosis? How long did it take you to get it?
I was 6-7 when I was diagnosed. I "got" it at birth, as it's inherited, but my bone marrow was failing around 7 years old. Before that, we didn't know anything was seriously wrong.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Bone marrow failure & transplant.
What has been the most useful thing for you so far?
The most useful thing has been having a bone marrow transplant in 2001. My donor was related, my 1 year old sister. She was an almost-perfect match and I never got GVHD.
What have been your biggest difficulties?
Not being able to have a normal childhood or a "normal" outlook on life since. I worry too much about the future, and I'm currently trying learn healthier ways to cope with my fears.
What things have you stopped doing?
I was really risky as a teenager, but as I've gotten older and learned more about my disease, I have less risky behavior and take care of myself more now. I don't smoke (never have), rarely drink, and stay out of the sun as much as I can, instead of wanting to get a tan.
What do you think about the future?
I worry but also know that I need to think past that and still try to live my life with as little fear as possible, and do all the things that I want to do without worrying about if it will matter when I'm gone. I try to be mindful of everyday, and see a counselor when I feel overwhelmed with negativity.
Finally, what advice would you give to a person in a similar situation?
There are a lot of people out there to connect with that share this disease and can understand your feelings, and some incredible doctors/experts studying and progressing the research on FA that make me very hopeful for the future.
