Nissa Novas was diagnosed with NF2 (NF2-related schwannomatosis) when she was 22 years old; two weeks later, she was accepted in to medical school. Surgery to remove the meningioma pushing up against her brain was successful, and six weeks later she started med school to become an emergency room physician. Nissa completed her residency and practiced medicine for ten years before she exhausted all possible accomodations and adjustments available.
In addition to complete deafness, Nissa developed bilateral vocal cord paralysis, which prevents her from being able to speak or breath properly, necessitating a tracheostomy tube in 2013. She also lives with vision problems due to cataracts, severe dry eye from not being able to properly blink and a partial retinal detachment. Nissa experiences chronic pain and exhaustion, vertigo, tinnitus, severe headaches, complete loss of balance, inability to swallow, complete right sided facial nerve paralysis, muscle weakness, and many other symptoms. She had a large amount of tumor removed from her abdomen and pelvis along with a radical hysterectomy and bowel resection in 2015, destroying gut function and making daily life even more difficult. In 2019 Nissa had another brain surgery for a meningioma removal and placement of a VP shunt to help with the pressure buildup and severe headaches. She also had placement of a feeding tube shortly after her weight plummeted.
Now 48, Nissa was determined to travel to New York from her home in Maryland to participate in the Make NF Visible photoshoot. We asked her the same questions we asked everyone, and this is what she has to say.
Why is it important to Make NF visible?
When I was diagnosed with NF2 almost 30 years ago there wasn’t much NF awareness. No one knew much about it or seemed to be actively learning about it. My doctors handed me the diagnosis and gave me a good luck pat on the back and sent me on my way. It was a very lonely and scary time with very little support or understanding. But we weren’t meant to walk through life alone.
Making NF visible cultivates community, connection, and deep friendships with others just like you. It creates so many opportunities for support, encouragement, guidance, and an improved life. This kind of advocacy helps provide a guide on this hard journey and is a constant reminder that you can do this and you are not alone.
By ourselves we can only go so far, but together we can go even further.
Can you share a personal moment that increased awareness of NF has had on your life?
It would have to be when I had to give up my hard-earned career as an emergency medicine physician and had surgery 3 months later for a tracheostomy. Both very devastating events that I did not know how to recover from; especially, psychologically. My mind was a war zone. This was probably the darkest time of my life. Bombs kept going off, I couldn’t cope, and I lost the will to go on. I didn’t leave my room for the rest of the year. During this time I learned of CTF and other organizations that were actively fighting NF and working hard to improve the lives of those suffering with this dreadful genetic disorder as well as the people that love and care for them. Just becoming aware of that revived my broken heart and brought me back to life. It’s the reason, aside from the amazing grace of God, that I am still here fighting.
What is something about you people can’t see because of your diagnosis?
In addition to seeing us and our disabilities and treating us with dignity and respect (as opposed to 2nd class citizens with no real value) it is also important that people “see” or are aware of all the damage below the surface that they cannot see. All the grief, sorrow, broken relationships, lost careers, financial strain, loneliness, shattered self confidence, psychological trauma, etc. NF doesn’t just grow on and destroy nerves. It destroys lives, minds, souls, spirits and potential. Often much more devastating than a tumor. We have endured and overcome so much more than what can be seen in a photo. Just something I’d like people to know.
What’s it like for you that people can see your tumors and the impact it has had on your life?
So I’m obviously different/disfigured now due to NF2. So people can see that and can understand some of the hardships we endure and can even have some compassion or empathy. But it’s still very surface level and, in my experience, not always lasting. People still see it as something with a beginning and an end. Something you could and should “get over.” That’s not the case.
The truth is all forms of NF are ongoing, progressive, constantly changing, and without a cure. People associate NF tumors and their treatments with cancer, while there are certain NF tumors that can become malignant or cancerous, for the most part, NF tumors are very different. While chemotherapy, surgery, and radiation are all used as treatments, they are never curative and there is no remission. At best, treatments slow progression of symptoms, but it’s never over. It never ends.
It’s constantly destroying your life and you’re constantly trying to rebuild it. Everything is hard every day. And it gets harder. The losses and grief are continual. You are constantly hurting, struggling, questioning your self worth, adapting, fighting to survive. NF is not just a tumor disorder. It’s also a communication disorder. It’s a mobility disorder. It’s an emotional and psychological disorder. It’s a life disorder. Yet, somehow, we go on. We overcome against all odds. We are born warriors/fighters.
Why did you want to do this photoshoot/participate in the Make NF Visible campaign?
For me, it was so I could be for someone what I needed so badly all those years ago. I wish I could have seen something like this when I was diagnosed. To see someone like you struggle with and survive the same types of things as you and still living a meaningful life is empowering and gives you the momentum to keep going. You realize it can be done.
I spent a lot of my life in the shadows, trying to blend in and praying I wouldn’t be “found out”… like a fugitive on the run. That’s no way to live. And if I can prevent someone else from having to go through that type of experience by being vulnerable and sharing some of my story and some of my pain, then it’s all worth it. I consider it an honor and privilege to be given this opportunity to impact lives in a tangible and meaningful way. It also rekindles my sense of purpose, gives me a voice, and a way to still save lives.
This advocacy campaign gives you the audacity and courage to step back into the light, to be seen, and reclaim your power. Thank you CTF for helping to Make NF Visible!
