Life of NF

Erica explains…

After having my diagnosis of NF2 confirmed when I was 23, I was determined not to let it define me.

While I have had over 25 surgeries to remove tumors in my brain, spine, legs, chest, arms, and hands, once I am done rehabbing and recovering, it’s time to soldier on and to make the most out of the life I was given.

Of course there are tough times, scary times, and frustrating times, and it’s okay to let yourself sit in those feelings and emotions for a minute, life with NF2 is not easy!  Find strength in your family and friends and lean on them when needed.  I always say trust the process, and extend yourself some grace.  Life is not easy, but boy is it so worth it.  I have often said that if I had to live my life over, I would not want to live my next life without my N.F.2 diagnosis.  It has given me the heart and spirit of a warrior and so much gratitude, always turning what I have into enough.

For Edie, it’s hard to describe what it’s like to have NF. It depends on what kind of day she is facing.

Edie works at a college and is grateful for supportive coworkers and students. However, those in the community have not been as accepting. Many are not familiar with her or with dermal neurofibromas and react in unkind ways.  She has close friends at church who show friendship and give hugs. They know HER and love her.

As does her extended NF family. Edie is famous for her love of dogs and some of our earliest memories are of her bringing her cute little dog to events. Anyone remember the spaghetti fundraiser of 2006? Or our first Central CA NF Chat at the park?  The picture below is one of our favorites.

We love you Edie and are so glad for the opportunities we have to socialize with you. Thank you for sharing your spirit and experiences with us. You have helped us have reason and strength to build NFC to what it is today.

Amarachi was diagnosed with NF1 in 2019, we had no idea what NF1 was until after my research; we had to leave Abuja Nigeria to the US for treatment.

The initial treatment didn’t yield much result, so we switched to another medication that is now promising. She has been able to go back to school and maintain a normal life. Amarachi is 6 years old now and getting stronger each day. We hope the medication will do more than shrink the tumors, we need them to be gone forever.

Furthermore, Amarachi has been on a certain mek inhibitor for 1 year plus, we are hopeful we will get her whole as the time progresses and maybe a medicine to cure the illness.

I believe there is nothing God cannot do, so we remain prayerful.

I am Mateo. I am 14. My mom has known I had NF since I was three and I remember going to different doctors all my life but I didn’t know about NF until a couple of years ago.

The hardest thing about having NF is not really knowing what all it is or exactly how it affects me. Everyone’s affected chromosomes are different and there just isn’t the research.

I do know I have a hard time remembering things or people.  I had to get shots when I was 11 to stop me from growing so fast too early.  Other than those I’ve been told I’m not where I should be socially.

Hopefully there’ll be a cure for NF soon!

Hi there, my name is Tony I have ( NF ) neurofibromatosis

As a baby my NF started out with brown spots on my torso and about around 3 years old my NF tumors started growing on my whole entire body. It wasn’t just about but the disfigurement it also came with  learning disabilities, Vision problems, Hearing problems, Heart problems, And a lot of pain.

Everybody’s  NF is different on how it affects each of us.

I had to be placed in special ed from third grade to the 12th grade. Learning, understanding, and comprehending the school work that was given to me. I was not dumb, I was not stupid, I was not an idiot, and I definitely was not the BIG( R ) WORD, THAT STUDENTS, TEACHERS, PRINCIPLES, AND EVEN STRANGERS, USED TO THINK THAT I WAS.

Just like other people with NF we go through a lot of surgeries throughout our life to try to better our lives and make it more comfortable for us to live day today. I have been told by thousands of people over my lifetime that I should be on disability. And I have to tell people that I refuse to be on disability when I am physically able to work. I don’t need people to feel sorry for me or pity me. I just need everybody to understand that neurofibromatosis or any other medical issues or physical deformities or anything else is going on in someone’s life. THAT WE ARE ALL THE SAME HUMAN BEINGS ON THIS EARTH.

So please don’t just stare at me and point and take pictures of me behind my back just believe me I see it I see it all. I would just rather you ask me about my condition so I can educate you. And I’m sure everyone else feels the same.

I have never in my life taken a free handout. I have work for everything that I own. I started working at 8 years old and have not stopped. I now own and operate two companies.

Thank you very much for your time and thank you very very much for taking the time out and looking up neurofibromatosis in educating yourselves.

God bless all of you.

GOD IS GREAT.