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Oct. 1, 2019

TOPIC: Featured News, Patient Stories, Patients & Members

Voices of Rare Cancer: McKinnon’s Story

Posted by Valaree DonFrancesco

This is my story about NF2. This journey began when I was 16 and got hit in the head from a volleyball. I went into a routine MRI and came out with brain and spinal tumors, which lead the doctors at the time to conclude that I would be deaf by the time I graduated high school.

My experience with NF2 has been so scary. Now 26, I still have my hearing but it took all the fight I have to battle this illness, including chemotherapy, immunotherapy, brain surgeries and phase 1 medical trials. Health care can be difficult with rare illnesses as there are only a few specialists who study these diseases. It can be difficult getting to and from treatment, as well as others understanding what it is. I can’t count the times I have explained to doctors what NF is. You really have to be your own advocate for this.

When I was diagnosed ten years ago, the outlook was horrible.They didn’t have the drugs that they have today. It was so scary but looking forward I believe that there will be a cure eventually, with education and funding. I am proof of these medications working, so I have hope. You need to have hope. Because without it, you have nothing.

I shared my story because I want others to know that they are not alone. I am scared and I am okay with being scared. I do not view that as a weakness. How you respond to fear matters. I also want the families to know that you are not alone. This has really impacted my family with ongoing stress. Also, my situation is different as I do not look affected. So I want others to not always judge a book by the cover. If you don’t believe me, you should see my medical bills! I want my community to hang in there and have hope. With God, all things are possible.