The Time is Now to End NF: Krizelle

Krizelle Alcantara is an NF2-SWN patient and a molecular biologist who is passionate about advocating for awareness and research for NF2-related schwannomatosis (NF2-SWN), formerly referred to as neurofibromatosis type 2, or NF2. She works as a Senior Research Associate in the Meyer Lab at the Center for Gene Therapy at The Abigail Wexner Research Institute at Nationwide Children’s Hospital in Columbus, OH.

Krizelle presented this powerful story as part of the “Mission Moment” at the 2022 CTF NF Conference. Below is the transcription of her story from that presentation.

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My name is Krizelle Alcantara and I have NF2-SWN. To be even here in front of you today, I consider myself very lucky because, exactly a year ago, I was days away from going through the toughest challenge any NF2-SWN patient would have to face. And that is a craniotomy, an open brain surgery, to take out one of my vestibular schwannomas. As you know, that is the hallmark symptom of NF2-SWN. It is two tumors on both of your hearing nerves that affect your hearing and balance and create other complications.

I was 15 years old when I was diagnosed, and my first MRI showed my brain just lit up like a Christmas tree. I have these two tumors on my hearing nerves, but also a bunch of other meningiomas throughout my brain. I was told that we couldn’t really do anything about it other than watch and wait or do surgery and radiotherapy should any of these tumors start acting up, which is not a very exciting prospect.

It’s a ticking time bomb. I know that somewhere down the road, we’ll have to deal with this. Coming from the Philippines, it’s very hard to deal with this, first of all, because hardly anyone back there knows or has even heard about NF2-SWN. Not a lot of doctors have any experience at all in treating NF2-SWN patients. But back then, we had decided to treat one of my tumors with radiosurgery, with the goal of trying to stabilize the tumor, which it did, but at the same time, it also took away the hearing in that ear on my right side.

So I had to deal with single-sided deafness for a while. I was okay for a while and that is the key word, for a while. It is a ticking time bomb. Until two years ago, I was fine, and then it became time that we finally had to deal with this ticking time bomb. The right side of my face started getting paralyzed, started losing movement, and I started getting headaches that I had never felt before, and I knew that something was very wrong with me.

My MRI early last year (2021), showed that one of my meningiomas had grown to a golf ball size, and it’s now pressing on the front part of my brain. And the vestibular schwannoma that we treated with radiation ten years ago has started growing, and it’s now pressing on my facial nerve and causing the paralysis. And so last year, I had to do back-to-back-to-back surgeries to deal with this, to diffuse this ticking time bomb.

That 10-hour surgery that I had to go through to take out that vestibular schwannoma on my right ear was the most intense thing that I had to go through in my life because I had no idea if I was going to emerge out of it alive. This is the reality of the NF2-SWN. I had to trust that my doctors knew what they were doing, that they knew what was best for me. And I’m very lucky indeed to have a great team back in Ohio State, I think one of them is sitting here in our audience today, Dr. Adunka. I just want to say thank you for saving my life. And that is my message to every single one of you here at CTF’s NF Conference. Your work here is saving lives. Your work here makes a difference, and we need you. Thank you.

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Each advancement in NF research promises hope and is a testament to your belief in a better tomorrow. The Children’s Tumor Foundation will not stop until there is 100% tumor reduction for 100% of patients. Please continue and deepen your CTF support by donating today at ctf.org/timeisnow.

Watch Krizelle’s NF Conference presentation here.