Ned The Neurofibromatosis Monster

Petey the PTSD Monster
May 26, 2020
Dr. Fria The Cold Urticaria Monster
March 28, 2020

Hello. I’m Neurofibromatosisaur or simply, Ned, and I live with Neurofibromatosis (NF). Penny (Chronic Pain monster) and Zippy (Chiari Malformation monster) are my best friends and I have two favorite colors – blue 💙 and green 💚. I like to explore places and find hidden things. I love to look for hidden treasures.

Sharing information about my condition is something I do a lot, and I found being upfront with others is the best way to help them understand why I have bumps all over me 🙂. I explain it this way:

I say that I have Neurofibromatosis, a genetic disorder that causes tumors to form on nerve tissue. These tumors can develop anywhere in your nervous system, including your brain 🧠, spinal cord and nerves.

By the time I explain that, everyone usually asks to know more information. So I tell them how tumors are usually noncancerous, but sometimes can actually become cancerous. Most often the symptoms are mild, but sometimes NF can include hearing loss, learning impairment, heart and blood vessel problems, loss of vision, and severe pain.

I also explain that there are 3 types of Neurofibromatosis:
– Type 1 (NF1) which causes skin changes and deformed bones and it usually starts in childhood.
– Type 2 (NF2) which causes hearing loss, ringing in the ears, and poor balance. Those symptoms often start in the teen years.

And finally, Schwannomatosis. That type causes intense pain and it is the rarest type 🤷‍♂️.

That’s what I like to share about NF, and here’s some facts I like to share about me:
Name: Neurofibromatosisaur
Nickname: Ned
Represents: Neurofibromatosis
Favorite Colors: Green and Blue
Special Skill: Can grow tumors out of thin air
Prone to: Cafe-au-lait spots, Lisch nodules, spinal tumors, cosmetic disfigurement

 

Merch

Want a little Chargieville love in your own home? That’s possible!