Celebrating 35 Years
neurofibromatosis, nf, nf1, faces of nf, neurofibroma

Jean – A Face of NF


I have NF1. I was born 1970 as an identical twin. My mom had two boys before us and another girl after we were born. My mom did not know until after she had all five kids that she had  neurofibromatosis. It was only in 1972 that doctors found out. Doctors found a grapefruit sized tumor in her leg and provided her with this diagnosis. This was only after they determine d that she didn’t have a mental disorder and wasn’t trying to get out of  taking care of five kids  (even though my father insisted it was a medical  issue and not mental). I have NF1 and so do my siblings. My mom was the first in her family to  have it. My twin passed away of brain cancer 1991, and mom passed from brain cancer in 2008. Both were connected to Neurofibromatosis.  Back in the 70’s not much was know about Neurofibromatosis, as they will still associating it with the  elephant man disease. I grew up with learning disabilities. I’m 5’1 and was short in statute growing up among my classmates. They  knew I was different. I was teased because  of the brown spots and little bumps. But also because of my speech. I stutter a little and sometimes mispronounce words. I had difficulty in science, history and English. My hand writing was bad. I was in  special reading groups and speech therapy.  Bullying back then has not changed much from what kids experience  today, except for the gun violence and how kids bully today to take  revenge or sadly commit suicide. Teachers and principals back then  told you to grow a back bone or even partook in the bullying. They transferred you out of their school rather than deal with the bully. I’m turning 49 years old on May 21st. As in my childhood, I still stutter and slur my speech. I wear glasses and have a hearing aid in my left ear. I have tumors in every disc in my neck and  a curvature of the neck, along with tumors in my power spine and siactive nerve.  When the light shines right, you are able to see the skin ones. I also have a  brain tumor in my hippocampus area of the brain. I suffer with memory  issues, my skin itches all the time, and I’m In pain most of the time. In March of 2017, I had surgery to remove a GIST, a cancerous tumor of my small intestine. I have been  cancer-free for two years. And thanks to the YMCA the program  “LIVESTRONG”, I was able to heal. (Check your local YMCA if going  through cancer -it’s a free program). Today I follow up with Dr. Maraka in Chicago for the Neurofibromatosis. The NF community has been a great  source of support because we didn’t have this in the 70’s. There is so  much more information available now. I live with a wonderful southern gentleman who has supported me and been by my side the past six years.  I don’t call this my neurofibromatosis because then you personalize  it. Neurofibromatosis is something that I live with and I try not to  let it control me and not the other way around. What I want everyone to know is you can have a happy life and achieve many goals while having Neurofibromatosis. You can have a family. Yes, there are bumps in the road that you will have to go around, but they are  not road blocks. At times you will cry, get mad, and even depressed –  however those feeling will pass. Look for the rainbows in life. And when you need help, reach out. It’s  not a weakness, but a strength to know when you need help. We are a  large community and extended family that share something in common. We  have Neurofibromatosis. But it’s not the end to our story. And the  thing about OUR STORY is that we are the authors.  Only we can decide what  direction it goes in. We ARE NOT ALONE!

– Jean


See More Faces of NF/Read Their Stories




Comments (3)

  • U are a very strong person. I was bullied through school u are right teachers and my peers. Bullied me. Mine ended up being physical as well as words. I was also bullied in my job People getting in my face tell ing me I was ugly. This person that did this informed me that she was better than me. When I correct her I got in trouble and came very close to losing my job after 17 years. I ended up moving to a different lived it and my coworkers. They treated me like I wanted to be treated and when ever I had a fundraiser for nf they were first to stand up and contribute. Thank you

  • I am just reading this now. My 18 month old son has multiple typical spots and bowed shins. Doctors “suspect” NF1 but I am sure he will get an official diagnosis soon enough.

    As a mom looking to his future, this is exactly what I needed to hear. That a person can be happy with this disease, despite the challenges. You have helped me so much by sharing your story, I am deeply grateful.

    I hope your journey continues to include lots of happiness now and in the future.

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