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Sunday, February 12, 2012

What Does NF Mean To You?

In my mailbox on Saturday!  Awareness bracelets for Neurofibromatosis that I had ordered from Kristi Hopkins at Thriving With Neurofibromatosis blog.  (Please visit her and be blessed by what her family is going through - she and several of her kids have NF!)  I bought them to share with my family in support of my grandson who has NF-1.  Never heard of it?  Neither had we until he was diagnosed at a young age.  It was pretty scary for all of us, but mostly for my son and daughter-in-law!  No one wants to hear a doctor tell you that your child has a disorder that may or not lead to cancer.  No one.  It takes time to get your head around all that ~ after the shock wears off.

Here is some information from

Neurofibromatosis (NF) is a neurocutaneous syndrome that can affect many parts of the body, including the brain, spinal cord, nerves, skin, and other body systems. NF can cause growth of non-cancerous tumors on nerve tissue, producing skin and bone abnormalities.
Effects of NF vary widely — some children live almost unaffected by it; rarely, others can be severely disabled.
NF is defined by tumors, called neurofibromas, that grow along nerves in the body or on or under the skin. As the tumors increase in size, they can press on vital areas of the body, causing problems in the way the body functions.
Neurofibromas often first appear in childhood, especially during puberty. NF is occasionally diagnosed in infancy (in children with more apparent cases), but more often in kids between 3 and 16 years old.
The first noticeable sign is almost always the presence of brown café au lait spots. These distinctive spots don't hurt or itch and never progress to anything more serious than spots. They can be found anywhere on the body, though not usually on the face. Tiny ones — freckles — may be seen under the arms or in the groin area.
Many neurofibromas can be removed. Although usually benign (noncancerous), an estimated 3%-5% become cancerous.
My grandson's tumors are on optical nerves, and in his stomach area.  He undergoes periodic monitoring with MRIs to determine if they have grown or if others have shown up on other nerves.  These tumors have not caused any disabilities or major problems to-date.  He also had severe scoliosis and underwent surgery to straighten his spine.  He now sports a titanium rod in his back that will no doubt set off alarms at airports.  This surgery has not limited his activity in the least.  In fact, recently he obtained his black belt in one of the Martial Arts!  Taikwon Do, I believe, but don't quote me.
Anyway, where am I going with all of this?  Just sharing one of our families medical concerns...and recognizing that most, if not all of us have a loved one who has some sort of medical issue that could use moral support.  I just love that Kristi had these special bracelets made so my family can wear them and bring awareness to NF! 
Have a blessed Sunday, and take a few minutes to bless those you love who need a hug or a prayer or just a note of kindness! 
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  1. Thank you for sharing this information!

    1. YOu are welcome! Maybe the more people who learn about it, the closer to a cure we will get!
      Hugs, GraceinAZ

  2. As a long-time nurse, I have not seen this. I read Kristie Hopkin's blog and what you wrote above. Wow!

    What a strange disorder. So many different types of symptoms.

    I will be praying for your family and grandson; as well as Kristin and her family. So many difficult and serious issues in our families and our world.

    1. Janet, thanks for your view. Yes, were it not for a very observant pediatrician, he would not have been diagnosed so early, and maybe not until his teens. They have been able to keep any eye on the tumors and watch for changes that could cause him problems.
      Hugs, GraceinAZ


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