My Child Has NF… Now What?

Neurofibromatosis  became part of my family’s life in the fall of 2000.  Until that time I’d never even heard of the disorder.  We learned of NF through specialist in Akron Children’s Hospital shortly after my daughter celebrated her first birthday.  By the time my daughter was 2 1/2 years old she was diagnosed and showed multiple symptoms of NF.

What is NF: 
Neurofibromatosis 1 (NF1): also known as von Recklinghausen NF or Peripheral NF. Occurring in 1:3,000 births, it is characterized by multiple cafe-au-lait spots and neurofibromas on or under the skin. Enlargement and deformation of bones and curvature of the spine (scoliosis) may also occur. Occasionally, tumors may develop in the brain, on cranial nerves, or on the spinal cord. About 50% of people with NF1 also have learning disabilities. (www.ctf.org)

 

 

 

NF issues can pop up at any time during life.  There isn’t a cure for NF.  Every case is unique.

 

 

  I spent many hours researching online.  I recommend educating yourself, knowledge is power.  You’ll learn where the road can lead  to and what to do about it. Just keep in mind the Internet houses many severe cases of NF and not every person has the same symptoms or out come.  Remember, some people have such a light case they don’t even know they have it. 

 

 

 

 

Reach out to others. Children’s Tumor Foundation has an online community available.  The community is willing to share their NF experiences and give support to other members. I’ve learned more from other parents then the doctors themselves.   Ask questions, they can help.

 

 

 

 

 

 

 

Stay positive! The road ahead hasn’t been paved.  All you can do is take it one day at a time. 

 

 

 

Email me scrapality@gmail.com if you have any questions or concerns.  Thank you for stopping by!

Shared with:
DIY by Design, Someday Crafts, Snap Creativity, Adorned From Above, Housewives of Riverton, A Creative Princess, Nominimalist Here, City Farmhouse, Gingersnap Crafts, Share Your Cup, A Glimpse Inside, The Life of Jennifer Dawn, A Delightsome Life, Cherished Bliss, From My Front Porch to Yours, Live Laugh Rowe, Made in a Day, The Charm of Home, Redoux Interiors, The Cottage Market, Domestic Superhero, The Girl Creative, The Answer is Chocolate, Liz Marie Blog, 36th Avenue, 504 Main, Serenity Now, Shabby Nest, Romantic Home, French Country Cottage, Common Ground, I Gotta Create, Shabby Art Boutique, Nancherrow,  I Heart Naptime, Bacon Time With the Hungry Hypo, Cheerios and Lattes, Be Different Act Normal, Too Much time, Silver Pennies, Twigg Studios, Flamingo Toes, Dream a Little Bigger, DIY Show Off, Classy Clutter, Nifty Thrifty Things, What About, Say Not Sweet Anne, Sew Many Ways, Scattered Thoughts of a Crafty Mom, Sew Can Do, Crafty Moms Share, Titi Crafty, Craft-O-Maniac, Mrs AOK, Sumos Sweet Stuff, Skip to My Lou, Uncommon Designs, Boogieboard Cottage, Mod Vintage Life, Tumbleweed Contessa, Homegrown and Healthy, Flour Me With Love,  Say Not Sweet Anne, A Stroll Thru Life, Vintage Zest, Cozy Little House, It’s a Vol, Cupcakes and Crinoline, A to Z, Carolyn’s Homework, Sugarbee Crafts, Our Table for Seven, VMG206, The Recipe Critic, A to Zebra, Elizabeth and Co, Coastal Charm, Can’t Google Everything, A Bowl Full of Lemons, Funky Polka Dot Giraffe