05/22/2026
Meet Norma — a strong, inspiring woman living with NF2-related schwannomatosis. Her resilience and courage continue to inspire the NF community. 💙
"When I was a teenager I was full of dreams. I volunteered as a tour guide in a museum of art, and I dreamed of living in Holland working at the Rijksmuseum in Amsterdam as a tour guide. Then, when I was 24 years old and I was about to finish university, I was diagnosed NF2 and my life turned upside down.
Since the diagnosis all my life has been about NF2, NF2, NF2. To try to find treatments or hospitals or doctors who help me with some problems related to NF2. It’s been years since I gave up my dream of moving and working in Holland, because NF2 is something so big that there’s no room for dreaming. I know that those with NF2 who are reading this understand.
I was lucky enough to join the clinical trial of NF2 at the NIH. After the diagnosis, I started getting connected with the American supporting groups of NF2. In one of those groups, I befriended a nice woman who years later talked to me about her brother. I met him. We fell in love, got married and in 2019.
As I write this, I’ve lived fully deaf (both ears) for 10 years now. I’m learning ASL, but my level is still basic. Since NF2 started I’ve done a big effort to keep working, because by working I feel a little bit “normal”.
I believe to live is not only about having your heart beating every day, but about being able to enjoy life, to do things you like, to work, to feel yourself productive and useful, to have fun, to make jokes, to do foolish things, to enjoy yourself and enjoy your time with family and friends. And I would like to know, those who are reading this and have gone through similar situations, what do you do to feel that all the pain, the loss, the fight, worth the effort? What do you do to make your life worth living? How do you give sense to this nonsense?
I LOVE life as long as I can enjoy it. I don’t want to be just a bystander, part of the audience. That’s pointless to me."
