This post has is sponsored by Collective Bias, Inc. and its advertiser. All opinions are mine alone. #IKnowAFighter #CollectiveBias
Have you heard of Neurofibromatosis (NF)? Probably not. Unless you, like me, know a fighter with NF.
Neurofibromatosis is a rare genetic disorder, characterized by cafe-au-lait spots on the skin, and tumors that grow along under the skin along nerve pathways, including spinal nerves, the brain, and cranial nerves. 1 out of every 3,000 births will have Neurofibromatosis, and parents who have NF have a 50% chance of passing the disorder on to their children.
I don’t know about you, but I think those numbers are way too high.
I hadn’t heard of NF at all, with the exception of a very quick mention of the disease in nursing school, until I met B. At the time, I had been attending a church group at the time that met during the week, and B was always there.
It’s hard to make friends when you’re in your early twenties, new to town, oh, and also, a divorced mother of two young kids. But B was always there, with a smile on his face, ready to chat and listen to me whine, or head to McDonalds with the kids so they could run out their energy while I totally zoned out with my dollar meal cheeseburger.
I don’t think I was the best friend to B, looking back, because I was so tired and out of it. I never really sat down to ask him about the bumps I had noticed on his skin, until one day, he told me that he had been having some issues with numbness in his hands and he had went to the doctor. He was going to need surgery to remove them from his spinal cord, and I was totally freaked out for him.
I knew he had Neurofibromatosis, but I had no idea how serious it could really be. I had no idea that the tumors continue to grow. I had no idea that they could be in his brain or on his spinal cord. I had no idea that even if he had a surgery to remove the problematic tumors, they could always come back.
The tumors are always there, and can always come back.
That’s terrifying. When I sat down to write this post, I sent him a message to chat about it. I wanted to get his permission to share what little I knew about his story, and to find out if there was anything he wanted me to share. You know what he told me? Even though NF will always be there, he’s not scared. He doesn’t really worry about them. What he does worry about is making sure his doctors are educated about the disease. He always has to make sure they have done their research, and he has to get second opinions because not enough people know about NF. Not enough doctors know about NF.
No one knows how to stop the tumors. No one knows how to stop it from being passed on to his children. No one knows how to cure it.
We can change that. NF affects 2 million people worldwide; which is more than cystic fibrosis, Duchenne muscular dystrophy, and Huntington’s Disease combined…. but there isn’t enough research being done. Research into NF can help more than just NF patients; research into this type of tumor can help cancer patients and those with other tumors as well.
May is NF awareness month, and I would like to encourage you to join the fight. The Children’s Tumor Foundation is committed to finding effective treatments for the millions of people living worldwide with NF. You can attend an event, donate to the cause, and share your story– do you know a fighter?