Thriving With Neurofibromatosis

by Kristi Hopkins

1 in 3000 people are born with Neurofibromatosis. It affects all of us 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 us are misdiagnosed, misunderstood, and often simply missed by a world of medicine that doesn't have a full grasp on all teh effects of NF. Stereotyped, ignored, or shunned by a world who thinks we either have the Elephant Man's disease, common migraines, or a few too many moles and birthmarks. In a society that values beauty so highly, NF'ers often choose to hide from others, and end up hiding from themselves. In 2007, Kristi chose to stop hiding, and start Thriving, as NF became 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.

130 pages, Paperback

First published December 2, 2010

Reviews

[Jan · Rating 1 out of 5]

Kristi and her fans were not happy with my original review, so here is an edited version. I gave an honest opinion about the book and its content. My opinion would have been the same had the book been written by Mother Teresa or Queen Elizabeth. I was not commenting about Kristi the person, I was commenting on the contents of the book.
My words were harsh and my thoughts could and should have been presented more tactfully. For that I will apologize. I was annoyed by the light hearted treatment of what I consider a serious topic. I should have waited until I was calmer to write my review. I have NF as do both of my brothers. Shortly before I finished reading the book, my brother returned home after having been approached in a restaurant by a man who told him that people like him were only allowed out in public because there was a human rights commission.
Keep in mind there is a difference between what I think of the book and its contents and what I think of Kristi the person. I think the person is doing wonderful things for NF awareness. I think the author could have been more forthcoming about the condition.
Now for my review. Simply put, I did not like the book. I don't think it went far enough info l
I've with NF. It was the author's life story, told in her words about the way neurofibromatosis has influenced her life. I think a little more information about the condition itself would have helped a great deal. Without knowing the facts about the condition a reader cannot really get the full picture of the battles some people face.
Looking at the picture on the book's cover I see that none of Kristi's fibromas are visible. When she meets people the NF is not the first thing people notice. She is blessed to have this good fortune. I wish pictures of other people's growths had been presented. That would have helped many people with the condition. So many people think we are contagious. But I do realize that most of the people who read the book have real life experience with with this condition.

Opinions are personal things. This is my opinion of a book I purchased read through the eyes of someone who has had more life experience with NF than the author. It is not a review of the person, just one woman's opinion of a book.

[Amy]

This caught my eye on the New Books shelf at my nearest library. I'm glad I had a chance to read about neurofibromatosis, as it afflicts several people I know, and I knew next to nothing about it.

Kristi Hopkins has made distinct choices to better her life and the lives of her children who have NF, but it took her until she was in her 30s to acknowledge its existence in her own body! But then she moves on, doesn't waste time and energy lamenting "what ifs".

She started a blog in 2009, Thriving With Neurofibromatosis (http://thrivingwithneurofibromatosis,...) to get the word out.

[Moshii Mars · Rating 5 out of 5]

Thriving With Neurofibromatosis is a genetic condition that hits home. First of all I decided to order this book off of amazon.com because I, myself live with the condition. The book was such an interesting read to read how the condition affects someone else. It was well informing and a short but very detailed and emotional read. I give it five stars because it takes a lot not just to write a book, but to write a book about your life style and how you are trying to deal with living with a condition not many doctors are informed about.

[Rachel · Rating 5 out of 5]

Kristi was able to be so open and matter of fact about life. She said it how she lived and saw it! Her ups, downs, fears, joys.. It was done in such a simple way. So much of it I can relate to. I also having NF, kids and many that do not understand it. I know now I will be more open and THRIVING! Thank you Krisi.

[Donna Vernon · Rating 5 out of 5]

Awesome read!!

[Farida Timal · Rating 5 out of 5]

Touched home...very inspiring!

[Kivalina Mauck · Rating 5 out of 5]

I loved reading this book.I hope to some day meet Kristi and her family.She is am amazing lady and a great Mother.

[Kristi · Rating 5 out of 5]

Loved this book i could really relate to this book having NF myself. I think the author did a great job writing about her life having NF.