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
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As said earlier I’m 54 now. I have more skin tumors now. The public makes more comments now about them. I’m in pain every single day and night. Especially siactic issues. No pain meds have helped. The TENS unit barely helps and with wires so short and my restless leg syndrome I’m getting shocks when I move around. My new email is . I’m still will my Southern gentleman. November I see Doctor Maraka for MRI’s and hopefully a solution for my pain. I’m still fighting for doctors to stop assuming I’m a hyperconact and just look at the MRI’s themselves. I was call one recently because medical supplies came up for renewal. Wheelchair old one was 11 years old. and gloves and bed chucks…. he claim he didn’t know what to put down for diagnosis and felt I was trying get him to commit medical fraud! I’m only on blood pressure medication and thyroid! if I was a medical fraud wouldn’t I be trying for narcotic pain meds and not supplies like gloves! he didn’t even look at MRI and just the last report said everything was fine. he actually said there’s nothing about tumors in neck or lower back! This is why I said earlier doctors especially new ones (he was my new family doctor) need to be told look at the films and not just reports! he basically said I will fill your meds but follow up with your cancer Doctor for and Medical issues that come up! yes I left his office that day and refused to go back and his sorry excuse he ended up later looking at MRI and saw the tumors…..
Besides all above my guy and I are going strong in sticking it out. (unfortunately he may need a new kidney in the coming year. Prayers for a miracle)…. Bless you all
Update. I’m 54 now. I still have my battles! Mostly with doctors who choose only to read reports that MRI’s everything stable. I dislike that the techniques do not say tumors at level such have not grown. It’s especially hard when new doctors/younger doctors don’t even take the time to actually look at the films themselves. Also technician are lazy with reports on CT scans! I know for facts because they state that my uterus is intact and looks fine. I had a hysterectomy in 2014 so no I don’t have one! A doctor once explained that they look over 20 if not more it’s in a day so when they don’t see anything they write up a general report! Well you need to fact check them and inform the Hospital because it’s your body and you have a RIGHT to have them to look at your films more thoroughly because that is way to big of A MISTAKE on a report. Makes you wonder did they real look or did they just glance over the report.
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.
Thank you. I’m just seeing this reply. As I’ve said we do have a future. But it’s what we make of it and not what’s others are telling you. You only hold yourself back when your relying on others and not what your heart and mind is telling you.
Encourage your son! When he’s down if need be cry with him. But then use those tears to build him back up. Grab onto the rainbows.
Even doctors can be against you and will say the word “can’t” . But use the word as you can’t stop me from trying. You can’t stop me from giving my all. Anyone reading this you can contact me at whenever you want to just talk and release pent up frustration.
How’s your son doing. it’s been a couple years. didn’t know this page was still up.
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