Life of NF

Jaxon sees NF appointments and challenges as an interruption to the life he wants to live.

He’s had 150 months of chemotherapy, seizures that stole his independence, and a tumor that took most of his vision.

Yet, because of that chemo, he still has some vision. He gets to live his dream college life in the dorms. He shares his stories to help other kids going through medical challenges. And he continually surprises his classmates with his karaoke skills.

When you ask Hayley what it’s like to have NF, she says her story is still being written.

As a teenager, she (and her doctors) wondered why she had constant pain. Eventually, they realized that there are tumors along her spine. Her ambition to better this world through promise and hard work motivated her to earn both a Bachelors and a Masters Degree.

She works at the same hospital where she was born and has received treatment. She wakes “up every morning blessed that she is here to spread her message, here to work towards her goals, and here to make a difference. And she can’t wait to see where her life can take her; NF doesn’t define her, but NF is a part of her.”

Carter says “If someone asks me what it’s like to have NF, I would say that it sucks because whenever I have to get surgery, I’m out of work.

And then it feels like I’m starting over from square one each time.

I have had surgery 14 times in my life. Can you imagine starting over that many times?

The only positive thing about getting surgery is the ability to donate tumor tissues for NF research. II like doing this because I want it to be used for research to hopefully find a cure. 

For Jackie, having NF represents who she is today.

Having NF has its ups and downs due to her experience with having cancer at the age of 14. She is almost13 years cancer free.

The struggles she had during school have not stopped her from success. She is thriving and continues to pursue her academic and career goals.

Jackie said, “I have such an amazing support around me that I’m thankful for everyday. I have met so many other young and older adults who have NF as well and it’s an amazing feeling to be able to connect with them and not feel alone.”

Neurofibromatosis is challenging for Terri. She says “I have NF but NF does not have me. I truly believe if God wanted me to blend in with others, He would not have created me to stand out. In spite of the challenges that come with NF, I choose to shine and not whine.”

Meet Sunny.

Sunny is pretty lucky. She lives a fairly normal life with NF. She has a bachelors and a masters. She doesn’t have too many noticeable fibromas, tumors or deformities.

So when she found out that her unborn son had NF, she prayed he was going to have the same experience. Unfortunately, that was not the case. When Noah was 11 months old, Sunny and her husband noticed that one leg was slightly longer than the other. This was the start of numerous doctors’ visits just to figure out what was going on.

Now, at the age of four, Noah’s childhood is marked by surgeries, medical appointments, and countless hours spent traveling to specialists. While his best friends run around, Noah is learning the ropes of medical procedures and enduring lengthy waits in doctor offices.

It’s not all bad; Noah gets a new toy for every doctor’s appointment and surgery. He even has a trick. He learned that he can stand on his longer leg to bypass some of the height restricted rides at Disneyland.

What is life with NF like for Theresa?

This is called Neurofibromatosis and I hate it. I was 35 when I learned I had NF1 .I found out when the doctor noticed my son had birthmarks all over his body, and I had some tumors on my body. It was a hard concept to take in, I knew nothing about NF, so I looked into this. The more I read , the more difficult it was for me to read on. It scared me to know all the problems that NF causes, and what my son was going to have. I worried for him with all the challenges he was going to go through. Like me as a little girl, school was hard for me. I made it through school and graduated. It wasn’t easy but now I needed to find work. Another challenge I had to go through qas not knowing I had NF and that it was the cause of my disabilities. I hate this NF, And these tumors that pop up.I have no control of. 

I hated looking in the mirror because of these tumors. That’s all I saw, what were people thinking is that what they see? My friends and family saw me, not these tumors. I’ve been having them removed, so far I’ve had close to having 30 removed from my face.  I’m so happy, learning how to cope and understand this NF. Having tumors removed is making my life easier. For the first time in years I can look in the mirror and like what I see,

I knew no one that had this at the time I was alone, scared, and (WHY?)  It was a long time not knowing anyone UNTIL I met a friend whose son has the same thing as me, I’ve learned a lot, YES it’s still hard for me to conceive this, I admire the young man who has left home and has gone to college. I’ve learned a lot from him; how brave he is. I’ve met a wonderful lady who has the same thing as me. 

Having good friends who care for (me,) who keep telling me they see me, not the tumors.  For the first time I feel I have friends who like me and are not judging me from these tumors.  

What does having Nf mean to Darla?  

As of today 4/22/2024, it is like a ball and chain, I am a prisoner within my own body at times. With that said, I will still push forward and continue to live and enjoy life to the best of my abilities.

Although life has not always been this way. I was diagnosed at the age of 2 at the time. I had minor cafe marks, a slight difference in leg size, and difference in leg length.

Physically over the years tumors grew, bumps and lumps appeared, and now my left leg is taking over my body. My left leg is 3-4 times the size of my right leg. I am in the process of talking to doctors about amputation at the hip. 

During school, I was bullied. I did not participate in many school events. I did have learning delays, an IEP, speech therapy, and adaptive physical education. I finished high school and went to college where I studied child development. I worked as a nanny and then as a preschool teacher for about fifteen years. 

I am unable to carry my own biological child; however, I participated in raising three children who are now grown. I also have three growing teens who are thriving and keeping me busy as they all play baseball and softball. Nothing is going to stop me from being on the sidelines in the stands cheering them on as they chase their dreams. I do this from my wheelchair with a blanket on my lap as if it covers my ginormous leg. I, as well as my children, endure all the stairs, snickers, name calling and bullying by adults and children. We ignore the best we can and keep pushing forward with a smile, being thankful for another day to live  

I continue to be as active as I can, pushing the limits, traveling with our bus (my leg is too large to travel any other way), keeping up with life as normal as I can.  Defying all odds stacked against me and letting it be known I have NF it does not have me 🙂 

What is it like living with NF2? Gabe says…

Living with NF2 will challenge you physically, mentally and emotionally. Being diagnosed with NF2 is definitely a life-changing event, that I would not wish on anybody.  However, I have met some wonderful people,  life long friends and picked up American Sign Language because of it. Since being diagnosed with NF2, I have earned a master’s degree in rehabilitation counseling, and I am one semester short of attaining my doctorate degree. I try to exercise regularly and eat healthy. But sometimes a cold Coke from 7-Eleven, taste so good. I am a firm believer that attitude is everything and having a great support system at home is crucial to succeed in life.

I am the fifth of six children, and my case is a spontaneous mutation.  I jokingly say I am a mutant!  It wasn’t until I was an adult that I met another person with NF.  Over the years I have learned so much about NF and consider myself blessed that I don’t have more NF related issues that I do have.

At birth I had a few café au lait spots, the pediatrician called them birth marks. Later when I was around 8. My mom took me to the pediatrician (a lady) for an earache. When she saw my café au lait spots and the freckling under my arms and told my mom that I had Neurofibromatosis. My mom’s response was I thought she had an ear infection!  The Dr.  took pictures of the café au lait spots and the freckling under my arm then sent me for an x-ray of my spine where they found a slight curve in my upper spine which continued to progress to about 33*. At 18 I had a spinal fusion of most of my upper spine T2-T10. Just the fusion, no hardware.

I didn’t walk until I was almost 2. Having ADHD I was not the best student in school and am still dealing with my ADHD as an adult.

I did my best to not let the fact that I have NF1 hold me back.  In high school I played Soccer, many times as a Goalie. Also did the Shot Put and discus on the Varsity track team. And competed one year on the Community College Track and Field team doing the Shot put, Discus and Javelin scoring enough points to get my Letter Jacket. After this is when I had my Spinal Fusion in the summer of 1979.  Spent 9 months in a body cast. Returned to college after 1 semester off, still in a body cast.  When cleared by my Ortho Dr I returned to compete on the Track and Field team doing field events, just the shot put and the javelin. Again, scoring enough points to earn my Letter Jacket.  

In 1982 I resumed playing soccer as an adult playing Goalie much of the time and continued to play until December 2016 when I was diagnosed with severe Dural Ectasia in my upper spine where part of my Fusion is. It was discovered when I had a chest X-Ray checking my lungs for Pneumonia.  I would have rather had pneumonia! 

I have hundreds of neurofibromas, most are covered by clothing.  The ones that were irritated by clothing or were in areas that could become problematic have been surgically removed. 

Stephanie wants to share her feelings about having a brother who has NF. She is 15, and Oliver is 19.  Oliver was diagnosed with scoliosis at 5 and had to wear a Boston brace until age 13 when he had to have a 10-hr spinal fusion surgery at Stanford. Stephanie says…

“If I’m to be honest, at first, I was jealous of my brother. He got all the attention from my parents and his friends while I just watched. But then that jealousy turned into worry and fear over time as I saw his state worsen. I became scared that one day my brother wouldn’t be here with me. Over the years that I have lived with my brother, I have wished so many times that it was me instead of him who was suffering, because I couldn’t bear to see my brother like that. I remember when he got his surgery I had to stay home when my parents and him went to the hospital. I would stay up at night just hoping my brother would be ok. It is difficult to be a younger sister to someone with NF, it’s hard to watch them go through all that and know you can’t do anything to help, but I wouldn’t trade it for the world.”

Tracy’s philosophy is two fold:

Life is what happens when you are making other plans.

Laugh as often as you can.

My first major surgery occurred at age 18 months. Another half dozen occurred by the time I was 18 years old.  Three undergraduate degrees in science and a graduate business degree helped me navigate two careers in science before I was forced to retire due to disabilities NF has imposed on me.

Today, I laugh at the “Gee, Whiz” moments, often experienced by physicians that have not treated me before, and who have never encountered an NF patient.  Sometimes this becomes a teachable moment for them.  For me, I stand tall and together with my wife, I face the challenges that each new day presents. If I’ve learned one thing in this life, it’s that we all have our individual challenges. I try to stay in place of gratitude, strengthened by faith, family and friends.  Life is good!

Dakota has spent most of her childhood in and out of the hospital and doctors’ offices. This has inspired her to want to help others. She is pursuing her education in family studies and hopes to be a child life specialist after college. 

Meet Christopher

• Favorite foods: Spaghetti O’s and Pizza. Plus candy! 
• Favorite teams: Raiders, Sharks, the A’s, and Cowboys.
• Favorite things: his family and friends. Visiting the pediatric patients on appointment days. 

Things started for me in December 2008, three days before my 22nd birthday I was diagnosed with Cancer.  A Sarcoma tumor, I was told it was a very aggressive and fast growing cancer. It had been found in August but by the time we were seen, the lump had grown to a tennis ball size. 

Trying to stop the rapid growth, the Doctors asked me to do a very aggressive Chemotherapy immediately.  I spent one week in the hospital on IV chemo drips and three weeks home for 3 months. The tumor did not respond so In March 2009 they did the first surgery of many to remove the tumor which was now the size of a softball.  They removed the tumor and my right bicep. The radiation afterwards basically caused me to lose all function of my right arm with the exception of my hand.  I underwent Physical therapy for three months trying to stop the Lymph edema (which is pain and swelling). 

From June 2009 to October I did chemo again.In December 2009 I received the best news, 4 days before my 24th birthday. I was told that all my tests were clear. This only lasted my birthday, Christmas, and New Years. 

Then bad news hit again.  On January 13th  2010 my doctor called to tell me I had another tumor in the same arm just above where the other one was.  My life changed even more on March 1st, surgery was done to remove the tumor.  They were not  able to do that because the tumor had embedded itself into the main arteries and nerves in my arm and hand.  By even trying to remove it they had already lessened my chance to use my hand again.  

They closed me up and told me the bad news the following day.  They gave me an option to “die” rapidly because it was such an aggressive tumor, or to have a full four quarter amputation.  

My choice resulted in surgery the following morning.  The surgery was a success, I was told.  They felt they were able to get all of it by the extreme amputation they did.  One week later, I went home.  It was difficult not having my dominant arm and learning how to do everything all over again.  

In June 2010 my first CT scan after my amputation was again a shock of bad news.  I was told that I had 8 tumors in my lungs. On July 1 st  2010, I had surgery to remove the tumors.  They removed 5 tumors from the left lung and three from the right. After one week in the hospital and the most painful surgery of all, I am in the process of recovering at home with a tube left in my lung to drain each time I feel the pressure and pain.  

In 3 weeks I will see the doctors again and decide if at all to continue any type of therapy.  As you can see the past 1 ½ years have been filled with doctors, tests, surgeries and much more.  I have remained strong and full of hope throughout my journey so far.  

This ends Christopher’s journal…and mine begins.

My son Christopher passed away three weeks after writing his journey.  On August 27 th , 2010, my son was admitted to the hospital only to find out that he had yet four more tumors in his lungs.  He was not able to have any more surgery so soon in his lungs.  The tumors were so aggressive they were just multiplying faster than the doctors knew what to do. He was told three days later that he was dying.  As my son lied there incredibly strong, he said “I don’t want to know how long I have.  I don’t want to count down the days on the calendar.” 13 days later my son passed away on September 11, 2010.  

This horrible battle took his life from the beginning of the dime size tumor to his passing in 21 months.  He was the strongest man I have even known.  He asked me specifically to be his voice and continue to educate people about NF. 

Christopher was an organ donor and that was very important to him. He NEVER had a “Poor me” or “Why me” attitude. He would look at the children at UCSF each visit and say “Why them?”. He was so compassionate and had the biggest heart for his friends and family.

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.

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!

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.

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. 

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.