Lost in translation: a doctor with NF2

Donate in honour of Nissa

Q: Tell us about yourself.

A: My name is Nissa Novas and I am 46 years old. I was born in Brooklyn, New York.

My mother immigrated to NY from Trinidad when she was 18. My father, who was born in NY, is of Spanish/Puerto Rican descent. His father immigrated from Spain and his mother is from PR. My parents met on the subway in New York and the rest is history. I have one sister that is 10 years younger than me, and a half brother who is 18.

I attended college at The George Washington University in Washington, DC and graduated at the age of 20 with a major in Biology and minor in Spanish language and literature. This may have been the most incredible achievement in the history of my family, as neither of my parents had the opportunity to complete high school let alone go to college. I then spent 8 years in Philadelphia, PA where I trained to become an Emergency Medicine physician. I practiced for 10 years in Maryland where I now reside with my labradoodle Claire and my mom

Q: What is your NF2 story?

A: I was 22 when I was diagnosed with Neurofibromatosis Type 2. I went to the doctor for headaches, dizziness, vomiting and loss of hearing in my left ear. This led me to an ENT specialist who ordered an MRI of the brain which revealed bilateral vestibular schwanommas and several other brain tumors. I was told I had NF2, a genetic disorder that causes tumors to grow in the brain and spinal cord, and most commonly on the hearing nerve; I was told that I would very likely go deaf.

I had never heard of Neurofibromatosis Type 2 before and my doctor at the time knew as much or as little as me. I soon learned from my own research that NF2 affects 1 in 35,000 people, and has no cure. It is a slow and unpredictable process, but over time important nerves and structures get squeezed to death causing devastating symptoms. No one in my family had NF, and I would later learn it was a spontaneous genetic mutation that caused me to be born with this disorder.

After considerable reflection, I pieced together that the first presenting symptom was right-sided vocal cord paralysis at age 9. My mom took me to the doctor for a sudden change in my voice; raspy with a nasal quality. No one could figure the cause and I was treated for allergies with allergy shots for months. I also had a few “birthmarks” that were likely café-au-lait spots.

During my initial diagnosis visit with the ENT, I learned that there was one tumor, in particular, a large meningioma, compressing my brain to one side, which was the cause of my bothersome symptoms, and needed to be removed immediately.

I had just moved to PA and was away from friends and family. I was alone in a cold, sterile doctor’s office where I was also told I should change my plans to become a physician because it would be far too difficult, and I should learn sign language. I remember being confused and upset, but it actually wasn’t my focus. Just two weeks before, I had been accepted to medical school and was well on my way to pursuing my big dream. The surgery was long and risky but thank God it went well. I was out of the hospital in 8 days and started medical school 6 WEEKS later.

That was 24 years ago and I have been on the run ever since; doing what I could, while I could.

Thankfully, I did not take that doctor’s advice. I completed medical school and Emergency Medicine residency in normal time and was blessed to have been able to practice emergency medicine for ten years despite gradually losing my hearing. This journey has been a difficult one with a lot of tough lessons. Being a female minority with a disability in the field of medicine has presented me with many formidable challenges which have taught me resilience and endurance. Being a physician with NF2 has also given me a unique perspective. Constantly being confronted with my own mortality and being acutely aware of how fragile life is has imparted me with a greater compassion and empathy.  It has kept me human, humble, and made me a better doctor. I’ve been a lot of places, met a lot of people, saved a few lives, and laughed a lot along the way. What a joy and privilege it’s been!

Over the years, however, I have had many things taken from me by NF2, and have always adjusted to try and compensate for the loss. I had gamma knife radiation, vocal cord surgery and various therapies in medical school and residency to buy me time and keep me functional. I have had a lot of surgery and procedures since then. I’ve also 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, 7 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 in 2013. I also deal with vision problems due to having cataracts, severe dry eye from not being able to blink and a partial retinal detachment. I experience 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. I had a large amount of tumor removed from my abdomen and pelvis along with a radical hysterectomy and bowel resection in 2015. This destroyed my gut function making daily life even more difficult. In 2019 I had another brain surgery for a meningioma removal and placement of a VP shunt to help with the pressure buildup and severe headaches. I also had placement of a feeding tube shortly after that as my weight plummeted to 72 pounds and I couldn’t eat or drink enough to maintain a healthy weight.

Losing my career was something I didn’t think I would survive. Somewhere along the way we learn to attach our self-worth to our accomplishments and I had spent my entire life up to that point pursuing this one thing that was suddenly gone. When my responsibilities as a physician were taken away from me I felt my purpose had also been taken away and I confused no longer being in charge with no longer being respected or useful.  I felt so lost and disconnected from everything and everyone. I didn’t belong anywhere anymore and I struggled a lot with feeling like a burden and a disappointment. There has been a tremendous amount of anger, bitterness and shame that threatened to devour me. My entire world collapsed and I was in a very dark place for a long time and didn’t want to go on. Thankfully with God’s help, I am beginning to make my way back into the light and will continue to press forward one day at a time.

I currently live in Maryland and am blessed to have a team of doctors who manage my care at the Neurofibromatosis Center at Johns Hopkins Hospital in Baltimore, MD. I have become more involved in raising awareness and understanding of Neurofibromatosis, as well as in some fundraising with CTF and NBS. We have come such a long way since the days when I was diagnosed, and we are now so much closer to finding a cure for this devastating disorder. It has threatened to destroy my life as well as the lives of countless others who live with this terrible condition. There is currently no cure and treatment is limited. It is time for NF to come to an end. All the research with gene therapy currently being done by NBS to find a viable treatment and possible cure is exciting and promising. And with increased efforts and funding I believe we will find a cure!

I love to read, write, am addicted to quotes and am a well-known lover of coffee, dogs, theatre and sunshine. I have 2 adorable nephews, Maverick and Cruz, ages 3 and 6 months. Being an auntie is a lot of work but it gives me real joy and happiness. I also enjoy party planning and celebrating life and have taught myself to bake from scratch. I am now an amateur home baker and cupcake specialist. It’s something I love and provides me with a much needed escape, and a sense of fulfillment. Also, the stress filled late nights remind me of night shift in the ER.  Not only has baking been life-saving to me in the form of therapy, but it makes me happy to brighten other people’s lives and see them smile. I used to help save lives practicing emergency medicine, now I help save lives in a different kind of way. Moral of the story: things don’t always go as planned, but they can still work out anyway. Never give up!

Q: How did you get involved with NF2 BioSolutions?

A: I met Clare Goddard online in the NF2 Crew. She later asked if I could do a video and share a little bit of my story for an NBS fundraising/awareness campaign. She then connected me to Christine Pelzer and Gil Atlan who helped me get that done. I am so grateful that I learned about NBS and the very important and innovative work they are doing. It’s just a matter of time until NF/NF2 is no more.

Q: What keeps you hopeful?

A: My faith in God and my relationship with him. It’s been a rocky one at times but he always helps me and sees me through every tough situation. I base my hope for the future on God’s faithfulness in the past. I have learned to focus on his unchanging character and how far he has brought me; and that he can handle my anger, doubt and fear.  He is always at work behind the scenes orchestrating events for my ultimate good. He has also blessed me with a mother that I could not do without. Her love is unconditional and her faith only grows stronger with time. She is the original warrior and is who I learned from. She is the one who taught me it is always too soon to give up!

Also, to see and know all the people who care and have dedicated their lives to eradicating NF2; working hard to restore hope and a bright future for those affected with this horrible disorder is so uplifting and helps keep me optimistic and looking forward.

Q: What is one take away or something you want people to understand?

A: This is for all the people suffering with NF/NF2: It’s not your fault. I know this seems obvious given its genetic predisposition but I feel it needs to be said.

Over the years what has been the most difficult part of having NF2 for me has been the psychological impact of this disorder. It touches every single part of your life as well as the lives of those you care for……on many different levels. I have experienced the death of many dreams, relationships, expectations and seasons of life. The painful process of constantly adjusting to having less and less and dealing with disappointment creates an ongoing grief/loss cycle. You find yourself apologizing for everything and feeling more and more like a burden and a terrible let down. There is a great deal of suffering that comes from constantly measuring yourself and coming up short and having this suffering hurt others as well. This can be just as destructive as a tumor and can often cause a tremendous amount of guilt and shame. It is critical to treat your mental/emotional health as well as your physical health and to be kind in the way you treat yourself and speak to yourself. Your body is not a reflection of your Spirit or what you can still achieve. You may have lost a lot and there may be a lot that you can no longer do but you can still inspire, encourage and uplift others. You still matter.

“When we do the best that we can we never know what miracle is wrought in our life, or in the life of another.”                                                              –Helen Keller

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