Meet Sarah Powlison. She joined the NF Network Advocacy program last year and has proven to be an amazing voice for NF. Read her inspiring thoughts below.

I was diagnosed with Neurofibromatosis Type 1 (NF1) the day I was born. My mom and older sister also have NF1, and a pregnancy scan had revealed a mass on my face. I was born with six tumors, about the size of an orange, growing out of my mouth. This, along with multiple café-au-lait spots (CALs), confirmed the suspicion that I have NF1. I was fortunate to have the tumors removed when I was just a few days old.

NF1 can vary significantly from person to person, even within the same family. What one person experiences may not be the same as another's. This variability can create a sense of loneliness. Growing up, NF was not widely understood or recognized, so care options were virtually nonexistent, and desires for learning or engagement were often dismissed by healthcare providers. Today, I am fortunate to have an outstanding NF provider who treats me as part of the team, offers a wealth of information, and demonstrates kindness and compassion. He involves other providers when necessary and helps me be proactive whenever possible while responding effectively when needed. In the past, I often felt like I had to plead for help, but now my NF team listens and offers options.

While I consider myself lucky, we still need changes. I believe that adults are underrepresented in discussions about NF. Communication often targets parents and caregivers rather than individuals like me who are living with and advocating for change, rather than just caring for a child with NF. Pain is another issue that is not adequately addressed across all forms of NF, and everyone is seeking better solutions.

We can help by advocating: Patients’ voices are urgently needed at the federal funding level, but that is just one piece of the puzzle. We need voices everywhere. Families must know they are not alone; adults must understand that this is not just a childhood issue; scientists and researchers need to recognize that this is a worthy endeavor; Congress needs to appreciate that investments should be made, with high rewards for both NF patients and the general public. Doctors must see the broad spectrum of experiences and learn how to best help. We need to share our voices to ensure that all possible outcomes are evaluated and that the most pressing issues are addressed.

I joined the NF Network Advocacy Program last year because advocacy offers an opportunity to shape the narrative and fight for myself and others. Sharing my story, along with the experiences of friends, can inform, inspire, and galvanize stakeholders into action, bringing NF research closer to our goals. It also allows me to be a role model for others facing challenges. My life ethos is centered around “loving my neighbor,” and having NF places me in a unique community. Advocacy, in its many forms, enables me to show love through actions and a powerful voice.

Personally, my hope is not rooted in this world. I will continue to speak out for as long as I have breath, knowing that my efforts may not help me, but they might make a difference for others in the future. I'm motivated by words of encouragement. When a parent tells me that I gave them hope, or when I can uplift a friend, it makes me feel empowered. While undergoing an MRI or waiting for results is not empowering, advocating for myself and others is exhilarating, and I find writing to be a wonderful outlet. I am currently working on publishing a children’s book inspired by and dedicated to this amazing community, and I hope it will hold significant meaning for its readers.

To anyone newly diagnosed with NF: I want you to know that it's possible to hold two feelings simultaneously - lament for all of the hard things, the loss, fear, and challenges, and at the same time, joy. There is real joy to be found when you suffer alongside others, or find humor in the hard, or just zoom out and see flowers instead of weeds, and a rainbow through the prism of tears. This is possible because of the community of support that exists through organizations such as NF Network. Patient Advocacy groups lead the way in funding and driving research, connect NF patients to support, and fuel the engine that WILL bring solutions. No one fights alone. 

It becomes much easier to navigate our own struggles when we recognize the concept of sonder—the understanding that everyone you meet has a story as complex as your own. This awareness fosters empathy for others and acceptance for ourselves. I am grateful for my existence, and I am so glad that you exist too!

 

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