Monday, May 5, 2014

MY Review On A Book Review

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
"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 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!



  1. This person sounds like a total bitch. Ignore it. Flush it. And move on. You rock Kristi!

  2. Kristi,
    Some people are so cruel and also very stupid. You are a great person and ignore this person.

    Love and Hugs

  3. don't listen to this person this was your story if they don't like it then that tier problem not ALL these websites give insight so take your comments and leave her alone why don't you try to make a book? and make it educational i found the book to be wonderful positive NF dose not always have to be about our story and facts you can reach out to people in many ways dont give the author i hard time just because your jealous (kristi your book is wonderful and i mean that it was amazing to hear your story don't take theses comments personalty)

  4. Sad, very sad, that people have to stoop to this level, she should read my blog entry today, and if she responds to it, ill let her have it. What I hate any more is on thing like this, yelp, urban spoon, and yellow pages, people are actually paid to leave bad reviews for places. If you don't sign up for a Yelp! acct and post stuff and pics of your establishment, people get paid to continually post 1 star reviews about it. High tech Mob non the less. Don't let it get ya down, like Jennifer said Flush it!

  5. Hey JAN-
    Did you even READ the book? Why do you feel the need to PUBLICLY put Kristi down, when it is very obvious that she is making a positive impact on the lives of people living with NF? YOU NEED TO GET YOURSELF A CLUE AND STOP MAKING YOUR SORRY ASS LIFE DRAG OTHERS DOWN INTO THE NASTY PIT OF HELL THAT YOU MUST LIVE IN.
    I have only known Kristi through Facebook and her blog. And she has shown such class in dealing with people like you. She is an amazing light for a disorder that causes so much uncertainties and darkness.
    If I have a question about NF....Or just need someone to talk to KRISTI IS THERE.

    You say she made no effort to educate herself????? Seriously WOMAN.....Looks like YOU are the one who needs some education!!

    I feel so sorry for you and the fact you feel the needs to spread your anger and hostility around....Like grease on a fire. I'll pray for you.

    Helen Dryer (Kristi's faithful Facebook friend)

    PS. Kristi like the first comment says. FLUSH THIS!

  6. Kristi,
    I am so glad I found your Blog. I have been researching glomus tumors all day after just being diagnosed yesterday and this is the first sight I've found that puts a human face on the mix of emotions as well as a great insight into what I am facing (bad and good). I've been suffering for 20 years now and have been diagnosed with numerous ailments (on Four Continents no less), none of which fully explained the pain and symptoms. I've been on so many medications I wonder if many of my symptoms are due to the drug side effects! It seems like such a small thing that has drastically reduced the quality of my life as well as the lives of my four children and husband. I look forward to working my way thru your blog archives and would love to read your book when I am done. My first appointment with the hand surgeon is next week! Please take this as a counter to the hostility you encountered from another reader. My life has been turned upside down for so long I am not angry that you are "thriving," I am INSPIRED!