Do you watch Scream Queens?
I normally don’t, but watched the episode from September 28th titled “Warts and All”. Â You see I heard that one of the characters on the show had Neurofibromatosis. Â Perhaps you have heard of it before, or maybe this was the first time. Â Now, you see, this episode hit a little close to home since I have Neurofibromatosis. Â Let me tell you something, the NF community was not happy with how NF was portrayed.
I understand Scream Queens is a somewhat dark comedy, and that the main characters are just not nice people.  I read that they poke fun at a lot of things.  So fair enough.  It even had a redeeming scene where one one of the characters stood up for Tyler when others where making fun of the way he looked.  Even with that one scene, it was still a bit tough to watch.  I honestly  feel if they would have changed a few things (like the title), or perhaps did a little PSA and the end, a lot of the NF community wouldn’t be quite as upset.
Today, Â I wanted to take the time to go over five things I think you should know about Neurofibromatosis.
1. It is a disorder, not a disease.
Neurofibromatosis is NOT a disease, sickness or ailment. It is a genetic disorder that you are born with. Half of the cases inherit it from a parent, spontaneous mutation account for the other half. It is not contagious, so there is no need to be afraid of getting it from an individual who has NF.
2. It’s not all that rare
NF occurs in 1 in 3,000 births. It is more prevalent than Cystic Fibrosis, hereditary Muscular Dystrophy, Huntington’s disease and Tay Sachs combined. Yes, combined! It occurs worldwide in all races, sexes and socioeconomic groups.
3. Neurofibromas, not warts, bubbles, or boils
Many times people with NF have tumors known as neurofibromas. These tumors are nerve tumors and grow on nerves throughout the body. This includes the on the skin, below the skin, the brain or any other nerves. Depending on where the tumors are located they could cause deafness or blindness. Â These tumors are usually non-cancerous, but can become malignant. Â Sometimes these tumors can be surgically removed. Many times the tumors are wrapped around nerves or organs making them inoperable, and sometimes painful. Even if you do remove neurofibromas (PS, pretty sure there is no magic “CO2 Lazer” like in Scream Queens) there is always a chance they can grow back. In order to keep an eye on these tumors, people with NF get routine MRIs. Â If something is found, MRIs can occur often, sometimes every 3 months (and remember if a child is getting one, that means being placed under general anesthesia).
4. Very variable
NF is an incredibly variable disorder. Neurofibromas are not the only thing that we have to deal with. Â The severity of the disorder can range from mild to very severe. Some people have only cafe-au-lait spots (birthmark type spots that are the color of coffee with milk), while other have many visible neurofibromas. Â Sometimes the neurofibromas grow large, and chemo radiation becomes necessary. Â Some children may experience learn disabilities or ADD/ADHD, seizures, stunted growth and more. It can even lead to death. Â There is no telling how NF will affect you, you just have to wait and see.
5. We have feelings
I feel like this shouldn’t need to be said, but sadly it does. We do have feelings. Being called things like ugly. gross, hideous hurts. Saying we look like a monster doesn’t help. We did not choose this. Imagine if your son or daughter was diagnosed with this disorder. Would you not want them treated kindly? We try hard to stay strong, but it can be hard. Simply put we are people just like everyone else.
Want to learn more? Check out these websites:
Children’s Tumor Foundation
Cupids Undie Run
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