[Image shows: 3 spoons laying on a laptop keyboard with a clipart of torn white paper with a red paper clip. On the paper are the words “Neurofibromatosis Awareness Month by Guest Writer Cassie Gunn” with the End NF blue and green ribbon above the text. And my photography logo at the bottom.]
May is a very busy month for awareness, there is arthritis, lupus, mental health, Ehlers Danlos Syndrome, World IBD Day, Lyme Disease, and there is also Neurofibromatosis (NF). Something many do not know about. So we have guest writer Cassie Gunn to talk about her experience with NF Type 1.
Neurofibromatosis Awareness Month
by Cassie Gunn
My name is Cassie Gunn. I was born April 5th 1990 in Edinburgh Scotland UK. I was born with Neurofibromatosis type 1 or NF1 for short. NF1 is an incurable progressive life threatening, life limiting condition that acts like cancer causing the body to grow tumours on the skin or nerves.
NF1 affects everyone differently so I will discuss how it has affected me… 🙂
For me NF is 99% internal, my spine and sciatic nerves are covered in hundreds of tumours thus causes 3 permanently slipped discs and Scoliosis.
I suffer from severe chronic nerve pain on a daily basis. I spend most of my time house bound lying down on electronic heat pads to try and ease my pain.
I have tried over 30 different painkillers including Morphine and different pain patches but none have helped me to even ease my pain.
At the moment I take Oramorph (liquid morphine) and Naproxen (type of inflammatory) to help to try and at least give me some relief.
I attend the chronic pain clinic every 12 weeks to see my specialist but if it’s an emergency I can see him sooner.
My pain specialist is the first doctor to actually sit down and actually listen to me, which makes me really happy.
Due to the severity of my pain, I began doubling up my painkillers by myself without anyone including my mum knowing, I was taking 38 painkillers a day to try and ease my pain. Taking these didn’t ease my pain and eventually my GP asked why I was needing my painkillers so soon and that’s when I told him what was happening. He wasn’t amused.
I have also recently been diagnosed with Gastroparesis and Ehlers Danlos Syndrome type 3, both conditions can also be connected to Neurofibromatosis.
Due to being chronically ill, I have lost all of my friends and my dream job of being a police dog handler.
I attend a respite to help me get out of the house and meet people who are my own age.
Due to NF is also have hearing loss in both ears so I wear hearing aids, poor eye sight, seizures, low muscle tone and Aspergers (form of Autism).
My total diagnoses are:
- Elhers Danlos type 3
- High anxiety
All of these are often connected to NF.
At first doctors believed that I had Fibromyalgia but it turns out it was something much worse.
NF didn’t affect me until 2010, I now rely on a wheelchair outside of the house as I struggle to walk far on my crutches..
It’s difficult being in so much pain, suffering from chronic nerve, muscle and joint pain 24/7 gets depressing after a while especially when I can’t sleep at night.
I am glad to have Facebook where i can connect with fellow chronic illness warriors, I know I am not alone.
Thank you, Cassie for speaking out and raising awareness!
If you would like to submit your story or experience this week, you can send me approximately 500-1000 word submission with or without a photo to my email: firstname.lastname@example.org