Celebrating 35 Years

Brittany’s Story

Did you know that in 2017 your donations provided research grants to the University of Chicago, the University of WI-Milwaukee, the University of Minnesota and Massachusetts General Hospital to further the understanding of NF1 and NF2 and related conditions?

Your support now will help ensure that No One Fights NF Alone because NF Midwest CARES (Clinics, Awareness, Research, Education and Support.)

Also, we have an anonymous donor who has agreed to match all donations up to a total of $15,000 until the end of the year! So right now your donations will be doubled!

Donate Now

Below, learn about Brittany who now has hope thanks to a clinical trial at the University of Chicago.

I was diagnosed with Neurofibromatosis Type 2  in January 2015, after fighting migraines for years. Getting that phone call from the doctor when they told me they found a mass left me with many thoughts racing through my mind. My first step was to meet with doctors to review my scans. This is when I came to find out not only did I have one tumor, but also had another one on the other side. This revealed my NF2.

At this point, I was at a loss for words, and I was trying to wrap my head around; why me? After, meeting with several doctors we decided to have my first surgery in March 2015 to do a partial removal of the tumor which came with the chance of hearing loss in that ear. After an 8-hour surgery, the doctors were able to keep my hearing and remove part of the tumor.

My year check-up is when I received the difficult news that the tumor grew back quickly without understanding why it did. This brought me to the next phase of my treatment, where I met with a new group of great doctors. In October 2016 I enrolled in a 2-year clinical chemotherapy trial at the University of Chicago, which I am currently halfway through.

Although, this journey has not been full of good news, just shortly after 6-months of treatment my tumors started to shrink tremendously, and I even started to regain partial hearing. I take a lot of pride in being strong and pushing thru adversity, so this amazing news brought me so much excitement and hope that the treatment was going to work.

Finding out that I had NF2 3 years ago has made me a stronger mother, wife, and employee. I do not let it hold me back. I have an energetic 5-year old daughter who loves playing hockey and baseball. I have been fortunate enough to coach two Gold Medal Special Olympics basketball teams. And I have a job I love as a program coordinator at Lincoln-way Special Recreation where I get to work with kids and adults with special needs that put a smile on my face every day. I do not let NF2 define me or dictate my life, and I am thankful for my doctors and my support system as I continue my life with NF2.

 

Leave a Reply

Your email address will not be published. Required fields are marked *

one × 1 =

<< View More

Get the Latest NF News & Updates

Sign up for our blog and always be up-to-date with Neurofibromatosis