The Children's Tumor Foundation
09/23/2025 | Press release | Distributed by Public on 09/24/2025 07:50
Story of NF: Sarah P.
Story of NF: Sarah P.
September 23, 2025NF1, Story of NF
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I was suspected of having NF even before I was born. An ultrasound revealed that there were masses on my face, and with two family members already having been diagnosed with NF1, it seemed probable. Immediately after I was born, I was transferred to a larger hospital in a different state, and the six-branched tumor, about the size of an orange (a branch of which broke off and caused septicemia), was fully removed when I was 4 or 5 days old. I have been saying "neurofibromatosis" and explaining what it is from my earliest memories. My case was unique and written about in a medical journal that I still have. It is very interesting to see the ways the language has changed in 40ish years and also how much it has NOT changed.A woman with short brown hair and blue eyes is smiling while sitting in the driver's seat of a car.
In the last several years, I have been physically very impacted by pain from nerve sheath tumors. I attempted a MEKi medication for 6 months in the hopes that it would help, but certain side effects became unsafe for me. Besides those removed at birth, I have had eight more tumors removed - 4 this year alone in three different procedures. I also received a spinal cord stimulator this year, but it has to be removed because it is pressing on a tumor and causing more pain without relieving other pain. I have innumerable tumors throughout my body, especially impacting my left leg and its major nerves. Just earlier this month, I had a roughly 6 cm nerve sheath tumor removed from my sciatic nerve and had to travel several states away to have the surgery despite having a skilled and robust healthcare team at home. I am always in pain, but I am hopeful that this latest surgery will lessen its impact. I dream of traveling the world more with my husband, as our kids are off to college and soon will be out on their own adventures. NF shades that hope because right now, traveling even short distances hurts…I can see that NF is becoming more visible as I age, and that makes me feel self-conscious.
A man and woman smiling for a selfie at an outdoor event with tents, people, and equipment in the background.
Joining the CTF Patient Engage Team was a huge lynchpin for me. It helped me realize that I could do something to make an impact, and it set the ball rolling for me to seek out other opportunities within the NF/SWN community. I enrolled in the NF registry and have participated in several research opportunities, which have allowed me to meet clinicians and researchers and see that they bring both scientific passion and empathetic compassion together to actually help people impacted by NF. I have a personal life ethos to "Love my neighbor," and the NF community is a very special and unique neighborhood that I get to engage with, care about, serve, and is filled with stories to learn that can broaden my own knowledge of people and the world.
My faith is the bedrock of my life. It has taught me to love others and to practice gratitude. It has given me, personally, the tools to carry the burden of NF without becoming broken by it. I have been married for 22+ years to Michael, who is both brilliant and selfless. He has never wavered in supporting me and helping me throughout surgeries and daily pain, lots of time spent in waiting rooms and waiting for results, not to mention medical expenses. I have three sons whom I home-schooled until graduation. They are all in college and forging career paths that will make a positive difference in the world. I LOVE to cook for friends and family, especially very flavorful, very colorful, and VERY spicy food!
Dream Superpower
Peacemaker
Favorite Food
Extra spicy South and East Asian cuisine, especially when it is made with plants or fish!
Fun Fact
I love words and write poetry. I love well-written literature, and one day I hope to publish a book people want to read and are happy that they did.
The Children's Tumor Foundation published this content on September 23, 2025, and is solely responsible for the information contained herein. Distributed via Public Technologies (PUBT), unedited and unaltered, on September 24, 2025 at 13:51 UTC. If you believe the information included in the content is inaccurate or outdated and requires editing or removal, please contact us at [email protected]