Hi my name is Brenda, and I have a disorder called Neurofibromatosis (NF type 1). You probably never heard of it, but surprisingly it can affect 1 in 3,000 births. There are many variations of how this condition can affect people such as bone deformities, disfigurement, hearing loss, speech and learning issues, it also causes tumours to grow on the nerves anywhere in the body.
The scary part of this disorder is, there is no cure! Symptoms vary from person to person as well as changes can occur with hormones, adolescence, puberty, pregnancy, and menopause.
A person can get this disorder through spontaneous mutation of the genes, I inherited NF from my mother. There is a 50% chance of passing NF on to your child, so 3 of my 4 children have the disorder.
Growing up with Neurofibromatosis in school was challenging; often teachers put on my report cards that I had trouble focusing in school, often day dreamed and had trouble concentrating, although I was never officially diagnosed with anything. Learning difficulties and ADHD are often associated with Neurofibromatosis. I’ve always struggled with math, and find it overwhelming to do simple math problems quickly, I find it very frustrating.
As I mentioned earlier, hormones can affect and worsen NF symptoms. My skin neurofibromas (tumors) have multiplied significantly through each of my pregnancies, I try not to let this get me down. I’ve been asked if the bumps I have are moles or mosquito bites and am sometimes am stared at; I have to accept that they are a part of me. Sadly there are other people who have this disorder way worse than me, some have so much pain they struggle every day, others have to go through medical treatments, surgeries, chemo, headaches and other health issues. I am blessed with an amazing husband who loves me, accepts me and is very supportive. Eddie is willing to do whatever he can to help raise awareness for NF.
In 2007 I saw my genetic specialist, we tried going through a family tree to see if Neurofibromatosis spread further down our family tree and had not been documented. During our consultation she connected me to a support group called Manitoba Neurofibromatosis or MBNF which has been a wonderful support system. It was great meeting others with NF and they are wonderful group of people. I feel very fortunate to have recently become one of the directors for this support group.
I don’t take life for granted, and focus on being healthy, I hope I can have a long life without this disorder taking over my body. My husband and I love to stay active and run half marathons for different causes. Last year in 2014 my husband and I ran a 5km race in Minnedosa for a run for NF, we also organized a run for NF in Winnipeg, and this May we have organized a fun Rumors Comedy Club fundraiser. This June we are so excited that MBNF is one of the Charity Partners for the Manitoba Marathon and we will proudly be running 13.1 miles for our amazing 3 boys who have Neurofibromatosis, they are our NF Heroes. It is my hope that each step gets us closer to finding a cure for this crazy disorder; for my boys, myself, my mom and for anyone who suffers with NF!
Thank you for reading my story.