Today - I wanted to address a book review that someone left about "Thriving with NF". This review caught me off guard for a few different reasons....First, and most obviously, because it basically trashes me.
I have gotten my share of hate mail, but this went on a personal attack level, that made me feel that either this person is just so angry at life, that anything positive just pisses her off. Or that maybe she just feels the need to personally attack people trying to make a difference.
Secondly, it seems like this person failed to realize that this was just a glance into my life....And how NF affected ME...My book wasn't written for educational purposes at all.
You can read the review directly by clicking HERE
(Quoted from www.goodreads.com)
"As someone with neurofibromatosis I can say with some degree of certainty that this book is pathetic. The author claims to be "thriving" with NF. In my opinion it is a pathetic plea for sympathy. I have the condition too. The author was either too lazy, too selfish or just too pathetically stupid to take the time to research her condition. Even after passing this gene on to her children she took very little time to become informed about the condition. She neglected to learn or mention that the gene for NF is a dominate gene and that she sentenced half of her children to a life of uncertainty. No mention was made of the way it can affect a persons life. No attempt was made to educate the general public on NF.
If you want to actually learn about NF I suggest you go to the website CTF.org. You will actually learn something there.
She seemed to revel in the fact that NF was a condition that qualified her child for a free trip to Disneyland.
The book is only as good as the author. In this case pathetically stupid."
Let me address the fact that I don't ask for ANY sympathy. I simply told my story, in hopes that it would make people feel less alone in the world of NF. Growing up, for me, NF was a curse word. It was what my brother had...and it was what tore my family apart.
This reader - didn't seem to understand that as I grew up....My symptoms were ignored. I saw MANY doctors throughout my life that NEVER ONCE recognized that I had NF. In fact I gave birth to 5 babies before ANY doctor mentioned NF!
"Lazy, selfish and Stupid"....? Call it what you want.
AFTER MY diagnosis and finding out that 3 of my 6 children had NF.....I TOOK EVERY SINGLE MOMENT I COULD TO BECOME INFORMED ABOUT THE CONDITION!
My book....WAS NOT an education tool about NF....Instead, it was a look into a life where NF snuck its way around....Affecting me in ways that went undetected, until I became an adult.
"No mention was made of the way it can affect a person's life".....? Excuse me? The ENTIRE book was about how if affected someone's life! For MANY....NF isn't diagnosed at birth...or at 2, 3 4 yrs old. This was a BIOGRAPHY!
To the person who left the review,
I am sorry you felt the need to personally slam ME for living a THRIVING life. I am doing everything I can do, to live a positive and fulfilling life....and also give my children the opportunity to do the same.
Yes....I LOVE the fact that our family got to go on a trip to Disney....Not BECAUSE of NF, but because it gave our family the opportunity to make memories together, that didn't include Drs, or MRI's.
I take full responsibility for bringing children into this world that have a medical condition. I am teaching them to be strong- positive people who understand what NF is....Since I was never given that by my own parents.
I agree...If people reading my book want to know more about NF, that they research it through other means. AGAIN-My book was never intended to be an educational tool.
I hope you find a way to be happy in your life...BUT- don't BASH people who are already doing it!