“With NF2 things can change in a blink of an eye. I remember going to a routine appointment and mentioning a patch of skin on my chest felt strange. The doctor immediately phoned my neurosurgeon, who ordered an MRI. I was then told I needed an intramedullary eppendymoma removed which ended up causing me permanent spinal cord injury. Honestly, I believe things HAVE to change. The current treatment model of watch, wait, surgery, radiation, ends up causing TOO many severe short and long term side affects. Gene therapy targets the root cause and could put an end to this.” – Emily
Emily was diagnosed with NF2 at a young age when her mom decided to have her hearing tested because her teachers said that she was not listening in class. Soon after, she had an MRI which confirmed there were tumors on her auditory nerves. Since then, Emily has had a total of 18 surgeries and undergone radiation 3 times to treat an aggressive case of NF2. Emily’s constant need for treatment has disrupted her schooling and her ability to work. Today she is completely deaf, her vision has been affected, she has a spinal cord injury, and she deals with inoperable tumors, severe neuropathic pain and chronic fatigue – and despite all this Emily says that she has met some amazing people along the way and is grateful for the friendships she has made.
Please help support NF2BioSolutions to advance gene therapy treatments for NF2 so that people like Emily do not have to endure a life of medical procedures and pain.