I found out I had NF1 when I was 14 years old. This happened only because I developed a few strange lumps under my skin on my forehead, one doctor thought it may be fatty tissue, and another doctor thought he would remove them and just to be sure. 16 years, and 6 surgies later I am a semi healthy 32 year. I can’t say the journey was easy, but it was a lot easier then so many other peoples that I guess I feel lucky. Continue reading “Ronda Price”

My name is John, and I have Neurofibromatosis – Type 1.

At an early age my mother knew there was something different about me.

My family doctor knew I had NF but did not say anything because “nothing could be done about it”. Another doctor formally diagnosed me in 1987. Neurofibromatosis was a scary and unfamiliar word at the time and my mother was devastated.

School can be an unpleasant when you are different. I remember classmates calling me names such as “shit stain” and “lumpy neck”. I hated changing clothes in gym class because of my café-au-lait spots and remember going home in tears because of the teasing.

My mother treated me like a normal kid. I was allowed to go outside to play, and grounded when I did something wrong.

In high school the teasing subsided, except for one student who called me “bee stings” all year. I no longer cried, but it still hurt. In grade 11 we moved to the suburbs, a fresh start. I made new friends and started to fit in. All was well, or so I thought.

In May 1996, I started noticing pain when I walked. I lost my balance and fell unexpectedly. My friend laughed but knew something might be wrong. Within a month my health had gotten worse and I could barely walk to school. I got an urgent referral to a neurologist whom upon examination, scribbled a note and told me to go straight to the emergency room.

MRI scans at the hospital discovered multiple tumours growing along my spinal cord. One of which was causing a compression between C1 and C2 vertebrae. I was admitted for surgery to remove the tumour. During my two-week stay in the hospital, the friend who “laughed” at my folly visited me everyday. We still remain close friends. I spent the next six months in therapy learning to walk and do everyday tasks again.

I started university in the fall of 1997. Still weak and walking slowly, It was overwhelming stepping onto campus for the first time. However, with hard work, support from the office for students with disabilities, and my mother, I was able to succeed. Four years later I graduated with new friendships, experiences, and a degree.

With fate and a bit of luck, I found a job one month after graduation and have been working ever since. My employer has been accommodating with my disability. NF has never been an issue for me on the job.

I’m not angry about my NF and accept it as a part of my life. Some days are good, some days are bad, but to me that is just life. I still get strange looks from people, which I now ignore.

A few years ago while in the change room at the gym, a man asked me “What does the doctor say about you?” I understood the true intention of his question, so I told him I was not contagious.

In 2009 I needed a vacation and decided I wanted to join a tour group to see the pyramids in Egypt. I was nervous about traveling alone and meeting strangers. Could I manage? What will they think of my NF? In the end, everyone was friendly and treated me with respect. One person asked me respectfully about my condition. I was happy to explain it was Neurofibromatosis and am glad I made the trip.

Last year, complications from NF appeared again. This time, it was tumours along my lower spine between L4 & L5 vertebrae. Another round of surgery to remove tumors, 3 weeks in the hospital, and 6 months in therapy. Funny, I’m almost getting used to this now.

There are a lot of difficulties people with NF face. Whether it is prejudice, depression, or complications resulting from NF. Some go through life without any complications. Others minor, and regrettably, some will experience extreme hardship.

Is very easy to worry about NF and the uncertainty that comes with it. Don’t spend too much time worrying about you or your family member’s NF. This will end up causing unneeded stress. Instead of focusing on what the complications from NF might be, Focus on everything you can be. There is a world out there, having NF should not keep you from it.

Choose to have fun, laugh, smile, pick up a new hobby, spend time with loved ones, enjoy and live life to the fullest. Do this and you’ll be too busy to worry about NF.

John Huynh

Jesse is a vibrant young 5 year old boy who as well as having NF (passed on by his father Chris) was diagnosed in November of 2009 with type 1 diabetes and has multiple insulin injections daily. When he was 2 years old there was a neurofibroma discovered on his optic nerve. He makes a yearly trip to the Hospital for sick children in Toronto for an MRI to make sure the tumor hasn’t grown, and isn’t affecting his vision, thankfully to this point the growth has been very minimal. Through all his troubles with both diseases Jesse makes no complaints and does everything a healthy 5 year old would do. He is such an inspiration to our whole family.

Contributed by Jesse’s parent, Chris

I was diagnosed with NF1 in 1962 when I was six. Prior to that, I had yearly visits to the cancer clinic at University Hospital in Saskatoon. My mom and the doctors were concerned about the tumour growing on the left side of my nose. Mom suspected that the forceps used in my delivery were the reason for the tumour. Mom was very protective of me, afraid of me injuring my self and having more tumours starting. I was ten before I could ride a bike without training wheels.

August of the summer when I was six brought the annual trip into Saskatoon visit to the cancer clinic, and the back to school shopping for the first time. The summer trips to the city always meant a night in a hotel, usually the Senator, and a movie with popcorn.

This time, I was Dr. Brown, who actually diagnosed me. He referred me to a plastic surgeon. He decided to wait a year before performing the surgery to remove the tumour.

I started my first year of school in the village of Birsay, along with about twelve other students, who I did not know as I grew up on a farm and had not met them in the circle of my mom’s friends. I was teased because I looked different. I was devastated when my first school picture did not turn out. Even as a child I suspected the photography company did not print the pictures because of that tumour.

I eagerly anticipated the arrival of the summer holidays, not for the release from school, but the hope that when I went back in September, I would look normal. The surgery did improve my appearance, but the tumour gradually came back.

My next surgery was the Christmas of grade ten. That was a long and invasive procedure. The plastic surgeon cut my upper lip in the middle then proceeded to cut along the side of my nose up to the corner of my eye. He pulled the skin back and the removal began. They surgical team had to scrap the plexi-form tumour from the spongy tissue of my cheek bone. I was put back together and sent to the recovery room about five hours later. When I woke up the next morning, my face was bandaged and swollen, my eyes were black, and I had a drainage tube up my nose. A few days later, the drainage tube and bandage was removed. My face was still badly bruised and swollen. The healing process took several months.

I had several minor surgeries to lift the left side of my lip, every time it was fixed, it would let go in a few years. Finally after moving to BC, I met a new plastic surgeon who used a piece of tendon from my left arm instead of wire. There is still a piece of wire anchored to one of my upper teeth. It took a few minutes to explain that to my dentist when he took ex-rays.

Years later, after mom and her sister had both passed away, I was given some letters mom had written my aunt. She told my aunt that I had just been diagnosed with NF, and that that is what their dad had died from. Prior to that all I had been told was that Grandpa died of a brain tumour at the Mayo Clinic in Rochester in 1939, and that they had kept his brain. So, now I assume that my mom had a very mild case of NF 1, she did have a few pale café-au-lait spots, but I never gave it much thought.

Aside from the tumour surgeries, most of the manifestations of NF do not interfere with my day to day life except for the fatigue. I have several small tumours, liche nodules in my right eye, high blood pressure, scoliosis, and several lumps and bumps on my midriff.

I chose not to have children because of the NF. I was able to have a tubal ligation in my mid-twenties because of the genetic reason. I currently live in B.C. with the love of my life and our four cats. I am looking forward to retirement in just over three years in anticipation of getting away from the rat race of the greater Vancouver area.

My name is Elena. I was diagnosed with NF at the age of 7. I found out when I went to the BC’s children hospital in order to have a tumor removed from leg I had broken earlier that year. At this time I was only diagnosed with NF and the tumor was not removed. I ended up breaking my leg 3 more times when they decided to operate. Continue reading “Elena Turi”

To some people, neurofibromatosis is a curse. It’s a disorder that causes painful tumors, deformities and life threatening illnesses. For me though, it’s something that has made me into a better person, and it’s something that I am beginning to appreciate.

I am the only person in my family living with NF, meaning I was a “spontaneous mutation”. For a long time, I felt like an outsider, I felt different than everyone else. All I wanted was for someone to tell me I was going to be okay, and that my NF would not take control of my life. Although I wanted to be reassured about my condition, I didn’t want any of my friends to know about my NF. My friends had no idea that I was diagnosed with a brain tumor, scoliosis, daily chronic headaches, growth hormone deficiency and two tumors in my pelvis all within four years of each other. It sounds silly; to be afraid of people thinking you’re a “freak” for having some kind of disorder, but high school can be a cruel place. All anyone wants is to fit in and be normal. Nobody wants to be the “sick kid” or the “weird one”. All I wanted to do was be a normal teenage girl.

It wasn’t until I attended an NF symposium in May of 2011 that I began to understand that I shouldn’t hide my NF, because it makes me a special and unique individual. While I was at the symposium, I had the amazing opportunity to meet Reggie Bibbs, from TLC’s My Brand New Face. Reggie also has NF, and it was through his great bravery and determination that I was able to find my own strength and courage. During Reggie’s speech, he said “Without fear we have no courage, and without courage we have no fear.” Those words stuck with me for weeks after the symposium, and really made me think. Why was I so scared of people finding out about my NF? Why was my fear getting in the way of me living my life to the fullest? That was when I decided it was time to “come clean”, and tell my friends about my condition.

It all started off with a simple note posted on Facebook about my life, and how NF affects me. To be honest, I was absolutely terrified of how people were going to react to my post. I was definitely surprised when I came to school the next day and had people coming up to me and hugging me, saying that I was “amazing”, “strong” and “brave”. I was so happy. I went home that night the happiest I had been in weeks. I felt like a huge weight had been lifted off my chest, and that I no longer had to hide anything. Soon after my note was posted on Facebook, I decided I was going to write an article into my local paper to try and raise awareness for NF. The article was a hit. People were coming to me saying that they “had no idea about my condition” and even people were admitting that they had no idea what NF was!

NF has sculpted me into the person that I am today, and it has made me a more honest, down to earth and truthful person. Although I have faced many different obstacles with NF throughout my life so far, I’m slowly learning that I can get past them. I used to think NF was a curse, and that I would never be the same as anyone else. Now I know that it is far from a curse, it is actually a blessing in disguise, as it has made me a stronger and more determined person.

Courtney Willoughby