Neurofibromatosis, or NF, looks different in every person. In my family, it spans generations and can be traced all the way back to my great great grandmother. My grandmother had Neurofibromatosis Type 1, and so did her mother and grandmother. My mother, her sisters, and I have it as well. My grandmother lived with a high number of neurofibromas and faced serious neurological and NF related complications throughout her life.
Even within the same family, NF did not look the same for any of us. Our symptoms and complications were all different. The one thing we shared was a lack of access to specialized medical care. That kind of care, especially from an NF care team, is critical for people living with NF because it is such a complex disease. It manifests differently in each person and can affect many different systems in the body. Patients need a team of specialists who understand the disease and, ideally, have deep experience treating it.
In 2022, I was diagnosed with a tumor on my right hypoglossal nerve, a cranial nerve in the brainstem. At first, doctors believed it was related to NF. They thought it had likely been there since birth and was growing slowly. This kind of tumor is extremely rare, even for people with NF1.
I spent months meeting with top neurosurgeons in Philadelphia, searching for answers. Again and again, I was told the same thing. Surgery was too dangerous because of where the tumor was located. Many doctors suggested radiation or chemotherapy instead, but those options are often avoided in people with NF because they can increase the risk of malignant transformation.
Still searching for a path forward, I traveled to Vanderbilt University to meet with a specialist who had experience with this type of tumor. I hoped this would finally bring clarity. It did not. I was still left without a safe or clear treatment option.
In 2023, I finally connected with Dr. John Golfinos and the NF team at NYU Langone Health in New York, and that became a turning point in my care. I am from Philadelphia, and finding specialized NF care there was difficult to say the least. That says a great deal about access to care across the country, especially because Philadelphia is a major city with prestigious hospitals. For the first time, I had access to coordinated, expert care from a team that understood both the complexity of my tumor and the nuances of NF.
At my annual evaluation in 2025, I was told the tumor had grown significantly. The recommendation was a craniotomy. For months, that was the plan.
Then, in June, weeks before my planned surgery, everything changed.
After a specialized type of MRI evaluation, doctors determined that the tumor was not related to NF at all. It was actually a paraganglioma, an incredibly rare type of tumor. That single discovery opened a door that had previously been closed. Because of this new diagnosis, I became eligible for Gamma Knife radiosurgery, a far less invasive option that would not have been considered safe under the original assumption. On June 26, 2026, I underwent gamma knife radiation, which was painless and non-invasive. I had virtually no symptoms, my tumor related symptoms have virtually disappeared.
What once felt like an overwhelming and high risk surgical path suddenly became something far more manageable. The shift was unexpected, but it also brought a sense of relief I had not felt in a long time.
NF still affects many parts of my life. I live with hypermobility syndrome, chronic pain, neurodivergence, scoliosis, and other bone related complications. These challenges shape my daily reality. But navigating this tumor diagnosis, and the uncertainty that came with it, has been the hardest part of my journey.
At the same time, it has changed me. It pushed me to ask more questions, to keep going when answers were unclear, and to speak up about the gaps in care that so many people with NF face. It has shown me how important it is to have access to specialists, accurate diagnoses, and research that continues to move forward.
NF1 affects about 1 in 3,000 people. People like me, my mother, my grandmother, and all those before her, and so many others deserve better answers, better care, and better options.
Your support truly matters. With more awareness and research, we can move closer to better treatments, improved care, and one day, a cure for NF.