Tags » Neurofibromatosis

LETTER: Wilmington's Wilston Johnston Explains Why He Rides in the NF Coast to the Cure Bike Ride

Dear Editor,

This year will be my 5th NF Coast to the Cure Bike Ride. I started riding for NF when my friend Scott Seeley asked me to join him in supporting his friend whose daughter has the disease. 492 more words


Learn to Dance in Your Storm

I absolutely adore this quote. My husbands grandparents gave me a plaque with this quote on it telling me that when they saw it they just thought of me. 501 more words

Physical Features.....the stares

My physical features maybe hard for you to look at. If I am honest with myself it is hard to look at myself and see the tumors in my face, legs and neck.  408 more words


Running Scared....Into My Father Arms

I have been running from my appointments lately. I am not scared, but I am tired. There is so many appointments and concerns. I have to first go get my results from my biopsy. 329 more words


Trying to Accept my NF

When I was younger, my Neurofibromatosis did not affect me like it does now. But, I do wonder if I had pain and challenges but ignored, what my body was saying. 364 more words


Thriving and Living...Unexpected Set Backs

My journey has came to a stop only for a little while. Within six months three people have died in my family. The last appointment I went to was ENT and she wants me to go to a pain clinic and The Cancer Center for a Biopsy. 297 more words


Stop Making Fun of Me it HURTS

It hurts when the people in your life talk about your physical appearance. In one breath they are being your friend but in that same breath, they are making fun of you. 547 more words