My name is Nissa and I was 22 when I was diagnosed with Neurofibromatosis Type 2. I was entering medical school at the time and went to the doctor for headaches, dizziness, vomiting and loss of hearing in my left ear. After an MRI of the brain and spinal cord revealed bilateral acoustic neuromas and several brain and spinal cords tumors, I was told I had Neurofibromatosis Type 2 (NF2), a genetic disorder that causes tumors to grow unchecked in the brain, spinal cord, and along nerves throughout the body. It is a slow process but over time important nerves and structures get squeezed to death causing devastating symptoms. I had never heard of NF2 before, which affects about 1 in 33,000 people, and has no cure.
Shortly after, I had brain surgery to remove a large tumor compressing my brain to one side and causing my bothersome and dangerous symptoms. It would be the 1st of many surgeries, an unreal amount of invasive procedures, MRIs, doctor’s appointments and continuous life adjustments.
In spite of this I completed medical school and residency and am blessed to have been able to practice Emergency Medicine for 12 years despite gradually losing my hearing and other functions. I have had a lot of encouragement and support from family and friends and have had people praying for me that don’t even know me. I am sure this and the grace of God is how I was able to press on all these years.
Unfortunately, I have not been able to continue to outrun NF2 and 5 years ago I was forced to resign from the practice of Emergency Medicine as there were no further adjustments I could make that would allow me to continue to do the job that I so loved. In addition to complete deafness, I have developed bilateral vocal cord paralysis, which prevents me from being able to speak or breathe properly. This required a tracheostomy tube in my windpipe through my neck. I also deal with vision problems due to cataracts, severe dry eye and a partial retinal detachment, chronic pain and fatigue, loss of balance, inability to chew/swallow, facial nerve paralysis, dental issues, muscle weakness, and many other symptoms. The psychological impact of this continuous loss and grief cycle has been equally, if not more, devastating. NF2 is a destroyer and it doesn’t quit until there is nothing left. It must be stopped.
Something I have not lost though is my ability to still be a voice through sharing my story and advocating for more NF research and a cure. And the one thing that NF2 has given me is a unique perspective on life and has summoned inner strength and resilience I didn’t know I had.
NF2 is tough but I am tougher.
As I head into another brain surgery at 44 years old, however, I am terrified and feel like NF2 is winning the fight. This is why the race for a cure to end NF is so critical and gene therapy, which tackles the disorder at its root, has the potential to make a cure a reality.
However, we need your help. Please join me in the fight by supporting NF2 BioSolutions and their mission to advance gene therapy research and a cure for NF2 by donating https://donorbox.org/gene-therapy-to-cure-nf2 This will not only make a tangible difference in the lives of all those living and suffering with NF2 daily but will also impact future generations. Thank you kindly from the bottom of my heart💙💚