Thriving with Neurofibromatosis

By: Kristianne Hopkins

Narrated by: Kirstianne Hopkins

One in 3,000 people is born with neurofibromatosis. It affects all of them in different ways. For some, neurofibromatosis is as clear as the tumors on their face. For others, it hides beneath the surface, creating tumors that destroy hearing, vision, and more. Many of them are misdiagnosed, misunderstood, and often simply missed by a world of medicine that doesn't have a full grasp on all the effects of NF. Stereotyped, ignored, or shunned by a world who thinks they either have the Elephant Man's disease, common migraines, or a few too many moles and birthmarks, NF'ers often choose to hide from others - and end up hiding from themselves.

My name is Kristi Hopkins. In 2007, I chose to stop hiding, and start thriving. NF had become a bigger part of my life than ever before, taking a firm grip on the health of three of my six children. Most people with NF, or any of a thousand other genetic disorders, focus on surviving from day to day. My kids deserve more than just to survive. And so do you.

Thriving with Neurofibromatosis. We all have a story, this is mine.

©2010 Kristianne Hopkins (P)2012 Kristianne Hopkins

Everything

This book is relatable in the way that it’s a mother who not only talks about her own struggles with NF 1 but her children’s as well. My daughter has NF 2. Not NF 1 but is still definitely relatable in the sense of me, her mother, watching her go through this and trying to figure out and navigate and advocate for her as we learn more and more and jump what seems to be endless hurdles. She’s 13 and has lost her vision and is half deaf. Thank you for writing this. I’m going to have her listen to this as well.

What a waste

Please don’t waste your time on this one. Nf is barely mentioned in this story. This book is more about her life growing up where nf is barely mentioned. I have nf and found this book a complete waste of my time