NF1-PN Care

Real Patient Living with NF1-PN
My tumor pulls my ear down, so my headphones are always lopsided. I don’t like it, but I deal with it.

– Vanessa,

living with NF1-PN

If you’re living with neurofibromatosis 
type 1 with plexiform neurofibromas (NF1-PN)

Coping isn’t care.

The adjustments you make are not an alternative to the care you need.

All images and quotes are from real people living with NF1-PN, but every patient’s experience is different.

Meet Antwan​

He’s been living with NF1-PN for decades. Hear him talk about life with the condition.

See His Story
Transcript

My name is Antwan. I’m 38 years old from Kansas City, Missouri.

From what I know, I was two years old when I was diagnosed with NF1. I didn’t realize what NF was really until I became an adult when it really started to give me some challenges.

In 2010, when stuff really hit the fan, it was like, all right, something’s really wrong. Like, I can barely breathe. Like, now I’m like, barely had any energy, and like, I was like, literally on my deathbed.

One doctor encouraged my mom to have me transferred. Another doctor took over and said, hey, we know exactly what to do. And that’s when they realized that a tumor was like, pushing against my lung. So it didn’t leave a lot of room for my lungs to expand, so I wasn’t producing enough oxygen.

But, hey, as long as I can still move around, I’m happy. Like, I don’t get around as easy as the average person, but to me, like, I don’t know what average is because I lived with this my whole life.

I always like to tell people I’m like the sickest healthiest-person you’ll ever meet.

So I’ve had 18 surgeries. I’ve been in the hospital over 25 times, but yet, I’ve traveled. Like, I’ve graduated with a master’s.

No matter what you go through in life, if you have that right attitude, you can, you can really do anything you want.

Want more stories? Stay connected to hear from other people living with NF1-PN. Sign up now.

What is NF1-PN?1-4

NF1: People with NF1 can develop plexiform neurofibromas (PNs), tumors that grow along nerves, causing pain, mobility issues, and changes in appearance.
NF1: People with NF1 can develop plexiform neurofibromas (PNs), tumors that grow along nerves, causing pain, mobility issues, and changes in appearance.

Coping with symptoms isn't the answer

Tips to help you stay on top of your NF1-PN

Finding a doctor

Having the support of a medical professional who is familiar with NF1 to help manage your condition can make a big difference in your outcomes and life.

Find a doctor in your area

Speaking up

Talk to your healthcare provider (HCP) about any new or worsening symptoms you may be experiencing, including pain, difficulty moving around, and visible changes to your tumor(s). They won’t know what you are going through if you don’t tell them! The NF1-PN Discussion Guide can help you prepare for your appointments. 

Download the NF1-PN Discussion Guide

Becoming your own champion

No one knows you better than you do. Taking an active role in your health and standing up for what you want can help you get the care you need.

Staying vigilant​

Even when you’re not experiencing symptoms, regular appointments mean your HCP can monitor the condition properly.5-7

Getting connected

Studies show that people with NF1 have higher self-esteem if they have friends who also have the condition.8
Find an NF1 advocacy group

Remember, you’ve got this!

The impact of NF1-PN

From physical pain to how you socialize, NF1-PN can affect you in many ways.

See How
  1. Ejerskov C, Farholt S, Nielsen FSK, et al. Clinical characteristics and management of children and adults with neurofibromatosis type 1 and plexiform neurofibromas in Denmark: a nationwide study. Oncol Ther. 2023;11(1):97-110.
  2. New and improved: the way to talk about NF. Press release. Children’s Tumor Foundation. May 9, 2023. Accessed February 2, 2024. https://www.ctf.org/news/new-and-improved-the-way-to-talk-about-nf/
  3. Lee T-SJ, Chopra M, Kim RH, Parkin PC, Barnett-Tapia C. Incidence and prevalence of neurofibromatosis type 1 and 2: a systematic review and meta-analysis. Orphanet J Rare Dis. 2023;18(1):292.
  4. Darrigo LG Jr, Ferraz VEF, Cormedi MCV, et al. Epidemiological profile and clinical characteristics of 491 Brazilian patients with neurofibromatosis type 1. Brain Behav. 2022;12(6):e2599.
  5. Stewart DR, Korf BR, Nathanson KL, Stevenson DA, Yohay K. Care of adults with neurofibromatosis type 1: a clinical practice resource of the American College of Medical Genetics and Genomics (ACMG). Genet Med. 2018;20(7):671-682.
  6. Ferner RE, Huson SM, Thomas N, et al. Guidelines for the diagnosis and management of individuals with neurofibromatosis 1. J Med Genet. 2007;44(2):81-88.
  7. Fisher MJ, Blakeley JO, Weiss BD, et al. Management of neurofibromatosis type 1-associated plexiform neurofibromas. Neuro Oncol. 2022;24(11):1827-1844.
  8. Fournier H, Calcagni N, Morice-Picard F, Quintard B. Psychosocial implications of rare genetic skin diseases affecting appearance on daily life experiences, emotional state, self-perception and quality of life in adults: a systematic review. Orphanet J Rare Dis. 2023;18(1):39.