Neurofibromatosis
That’s a pretty big word, but what exactly is it?!
The following just scratches the surface of what NF is, but I wanted to give a little info.
Neurofibromatosis, also known as NF, is a genetic disorder that causes tumors (also known as neurofiromas) to grow on nerves. These tumor are usually benign but can become cancerous. They can occur just below the surface of the skin, or deep in the tissues of the body. Tumors can also occur in the brain, on the optic nerves, or on auditory nerves. NF can also cause scoliosis, epilepsy, and learning disabilities (in about 50% of people). Sometimes tumors, even though benign, may require chemotherapy, radiation or surgery.
How is NF treated?
Today, there is no real treatment for NF. Treatment looks different for each person (since the disorder is never the same person to person). First, you have to monitor. Monitoring NF requires MRIs, EEGs, ophthalmology appointments and neurology appointments. Since NF can cause tumor to grow any where it is crucial to stay on top of monitoring. As mentioned above, sometimes these tumors require chemo or surgery. In all honesty, not great options.
You may think, I’ve never heard of this before, it must be rare. It is not. NF more common than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined!
Thankfully people are working to find a cure, but more can always be done.
From CTF.org
May is National Neurofibromatosis Awareness Month (and in particular today, May 17th is World NF Awareness Day). Many cities are “Shining a Light” on NF. So, if you see a building lit up with blue, this may be why.
Two years ago (when I was about 8 weeks pregnant with Autumn) I participate in the Cupid Undie’s Run to help raise money for research.
One of my best friends from childhood (we’ve been friends for 25 years), and my SIL and her hubby participated too. Since who wouldn’t want to run in their undies in the Michigan winter? It was super cold when we did this, like single digits, so lots of people wore some layers. It was great fun!
So today, if you want to help raise awareness of NF, why not throw on a blue or green shirt and post on social media using #EndNF.