Tags » Neurofibromatosis

Woman gets pregnant, then suddenly her body becomes covered in small bumps Yahoods.com

Libby Huffer, from Fort Wayne, IN, had a happy, normal life. She was born with quite a few beauty marks but nothing severe. Then suddenly in her teenage years, her body began to break out into small lumps. 12 more words


The power of sharing and the importance of privacy

We live in a world where everyone is constantly sharing their most futile actions, such as eating a bagel, as well as sharing their biggest “secrets” on social medial. 591 more words


This afternoon I found out I had a missed call and voice mail from Children’s Health. I have been trying to get an appointment for Alice with Dr.Klesse and the referral final went through. 368 more words


What is "Living in Hopeland"?

Today is October 21st of 2016, and while the weather is one of the most beautiful of the year, I spent the last hour glued to my computer. 312 more words


One step forward... to crumble to our knees.

Follow up to “Breathless”and Progress Zero, I will be documenting the progress of our daughter who’d recently been diagnosed with Neurofibromatosis 1 or NF-1.

September 15th, 2016 Thursday… 1,160 more words


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