Who Is Kristi Hopkins?

I'm Kristi...A 39 year old, mother to six kiddos.  
I have Neurofibromatosis type 1.

I grew up in a family where Neurofibromatosis was curse word.  The utter mention of it grew guilt and fear in my parents.  Understandably so.

I was officially diagnosed with NF when I was 33 yrs old. I grew up watching my Mom and older brother struggle with the symptoms, but never had any real issues until after my own diagnoses. As a child, knew I was different, but no one knew it was because of NF. 

After symptoms began appearing, even I denied that it was in fact NF.... hiding in my fear. It has taken me a long time, to finally accept the diagnoses, and break the cycle of fear and resentment. Instead of just living with NF, I have chosen to THRIVE! Using the fear and turning it into doing something productive and positive!

Three of my children got the  'official' NF diagnosis, after I did.

Some Questions:

  1. Do you regret having children?  -- Absolutely NOT.  What I regret is not being fully prepared for a life with NF.  I cannot control how my parents chose to handle NF, but I CAN control how I choose handle my own NF.
    I do wish I had more knowledge BEFORE I chose to become a parent, about what it would mean to have a child with NF...But I cannot change the past.  I am overjoyed to be a mother and vow to break the cycle of ignorance.  I am educating my own children and building them to be strong in whatever they choose for themselves.
  2. How did you go SO LONG before being diagnosed with NF?  --The simple answer to this is just that my parents did not pursue a diagnosis for me, because according to them, the doctors that treated my brother (who also has NF) also examined me and my other 2 brothers, and told them that we did NOT have it...and they didn't have to worry.
    The rest of the answer is simply- ignorance...Both on my part and on the part of the medical community who just didn't recognize the symptoms I had, as being NF.   I had FIVE babies, many physicals and countless "checks" before ANY doctor connected the dots. (or bumps in as the case may be) LOL
  3. What made you want to write a book?  --I hoped that if I wrote my stories down in a book, that it would possibly help someone...somewhere.  For so long, I have felt so isolated -- And maybe if I told MY story, someone out there would feel less lonely.
  4. HOW did you write your book and get it published?  --It took about a year of actual writing.  Getting my stories out of my brain and onto paper was probably the hardest part.  My hubby helped and encouraged me throughout this process...(Sometimes he pushed me hard)
    Believing my stories were worth telling was a hard one for me.  I had a lot of days where I didn't feel like anyone would care.
    We self-published the book and do a 'print-on-demand'  style.
    I have sold books to people world-wide and find it quite humbling when I see my book on the shelves  of libraries or medical clinics.

Please feel free to ask any questions below in the comments -- 
I will answer as honestly and openly as I can. 




  1. Plz can u send me ur emailid my id is samydias31@gmail.com my mom and my sisi and me to have it

  2. Hi Kristi
    As you know I have been trying to rais awarness for NF here in the UK for a sometime now. i have also started a book. What tips can you give me. Not taking anything away from you but how can I sell braceletts here.
    David Edgerton

  3. Thanks Kristi and all your children for sharing this experience with us. My son who is turning two in a week is still in the process of being diagnosed, as they need one more symptom to confirm officially (they are 90% sure). I am a big believer in not dwelling on the unchangeable, I can't change what will happen. I can be well informed and help support my son in whatever life throws at him. Thank you though for letting me see I'm not alone :) Martine (South Australia)

  4. Hi,I have both NF 1 AND 2...I also never found out till I was older I think I was 35...both my daughters have Nf as well as my 2 grandchildren....I now suffer with severe pain eveyday...what makes it worse is my older daughter blames me for my grandkids having this..my right arm was deformed when i was born they thought because my mom fell while pregnant it cause the bone to break..I had my ulna removed and a piece of my hip bone was used to reconstruct my elbow and wrist..I can do most things and my arm is shorter than my other...just needed to vent as I now suffer with fibromyalgia ..its a challenge everyday as now someday I will have trouble just to walk..hope all is well with you..thanks for listening.. Marcia

  5. Kristi,
    Thank you for your book. My husband has NF1 and we are just beginning to learn about it. Like you, he was not diagnosed as a kid. Hoping to learn more!
    Janet in TX

  6. I plan on buying your book, Krisit. I did not find out until I was 32 years old and like you, doctors never connected the dots. I was told my cafe au lait spots were just birthmarks. Not until my younger son was officailly dianosed at age 5, were my older son and I told that we also had it. I have been struggling trying to get proper educational placement for my younger son and see my older one struggle with math concepts, etc. as he gets older (his sypmtoms were never as severe as my younger), Also, I have been looking for financial assitance as he requires much more therapy and doctor visists than most normal kids need. I am all about spreading awareness for NF.

  7. MY hubby has NF1 and malignant pheochromocytoma and this is his journey https://www.facebook.com/groups/THCvsPHEOcancer/

  8. I am 32 years old and struggling with NF1 my mother has it as well as my older sister and brother, and now my dsughter...I order your book and can't wait to get it Nov 4.

  9. Hi how can i subscribe to your blog and buy your book

    1. At the top of this page- you can subscribe by entering in your email.

  10. I am the only one in my Family with NF and I still struggle with self esteem and hate how ugly it makes me. Any advice would be great.
    Ugly Freak

    1. It's hard - I understand. Part of how you deal with NF is how you treat yourself. If you view yourself as "ugly"....then that is how others will view you.
      You have to find things about yourself that you like....And build up your self-esteem.
      Once you are more confident with yourself...it will change how others view you.
      I still have trouble with being 'out there' in the world....But I have started to take on a new attitude when someone looks at me wondering what my bumps are... I take it as an opportunity to teach them something.

      It doesnt always go perfect...and some people dont want to be taught....But the more I am out there in the world....the more I see myself as someone worth loving and knowing.....The better I am treated.


  11. I have had NF all my life and I still struggle with how low my self esteem is. I'm the only one in my Family with NF and I hate it, a lot of times I hate myself. I have a tumor on my eyelid which makes it stay closed and a few bumps over my body. Any advice to not hate myself would be great please

    1. Decide right NOW. Decide that you are NOT ugly. Everyone on this planet has something about themselves that do not like....YOU are to believe that you are beautiful. It may not be picture perfect -- But YOU....are YOU....And you must believe that even when the world shows you images of things that are beautiful....TRUE Beauty comes from within.
      I know a LOT of "beautiful" people....who act so mean and ugly.

      Start with who u are as a person. Do you love? Do you have empathy? THOSE things to ME...are what make people beautiful.


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    1. Thanks for your message. I am extremely self conscious about my bumps. Especially my back. Touch really bothers me.....And I think that my attitude affects my husband more than my bumps do.
      Most of intimacy is emotional....Not physical...So my advice is to work on loving yourself.
      Find things you like about yourself, and focus on them.
      You have to remember...You are worthy of love...You deserve to be touched...AND YOU ARE BEAUTIFUL...Even in those times YOU cant see it.

      LOVE and HUGS to you!

  13. hi im the only one having NF. and im wondering, is there any way to stop the growth? im 25 yo. and i realized it was NF when i was about junior high school. it seems that it getting more and bigger. is there any food that we need to stop eat to reduce the growth? thankyou. B.