NF1-PN Care

Real Patient Living with NF1-PN

Helpful NF1-PN resources

I find that writing down how I’m feeling helps ensure my doctors understand.

– Lindsey, living with NF1-PN

Resources for your patients and practice

The information and materials below have been provided to help you facilitate the transition of care for patients with neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) and to help them navigate the complexities of their condition.

Videos

Meet Antwan​

Antwan has been living with NF1-PN for decades. Hear him talk about life with the condition.

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.

Owning NF1-PN care

See Antwan talk about how he stays motivated even on tough days.

As far as what does owning your own care mean to me is one, knowing your body, knowing when something’s wrong, knowing when something’s off, and being able to communicate that to your doctors.

Like definitely when you live life with, with NF, you never know when something debilitating can happen to your body.

Really knowing when something’s off and having the discipline to contact your doctor and let them know.

And not like just thinking, like, well, I’m being a baby. It’s not that big of a deal.

Even if it’s small, it can turn into a big deal.

So when a doctor appointment is scheduled, you know, go to it.

Even if you think nothing’s wrong with you, you know, make sure you go to your follow-up appointments.

I just love life too much not to take care of me. Cause you are your best asset. You are your best asset. Nobody can take better care of yourself than you.

Monitoring NF1-PN

See Antwan talk about why it’s important to monitor NF1-PN symptoms.


If I was talking to an NF1 patient that didn’t think it was important to see a doctor or to monitor themselves, I would say, don’t be, don’t be naive like I was.

Because if you’re not seeing a doctor on the regular and you’re not monitoring it, what if something does turn to cancer and you’re not seeing a doctor on the regular?

When I got sick in 2013, they found a huge tumor. They even showed me a picture of it. It was crazy. I can’t believe how big it was. That was pushing against the lung, and they found, they found cancer cells in that tumor.

But luckily for me, because they caught it early and because I was seeing the doctor on the regular, they were able just to remove that tumor, and they stopped the cancer. Cancer never was able to grow anywhere.

I get CAT scans on a regular just to make sure no new tumors are popping up. And if a new tumor do pop up, they usually biopsy it right away.

So it helps, you know, seeing a doctor on a regular basis.

If you can stay on top of it, a lot of times when something new pops up, they can catch it before it gets out of control.

Downloadable resources​

Materials for your practice

NF Clinical Care Options*

Created by the NF Network to provide an overview of NF1.

Materials for your patients

NF1-PN Discussion Guide​

Make the most out of conversations with patients by sharing this tool that they can use to track their symptoms between visits and prepare questions to ask.

Helpful guides from the Children's Tumor Foundation (CTF)*

The Children’s Tumor Foundation has a variety of brochures that you can share with patients and caregivers about NF1, including:

Helpful guides from the NF Network*

The NF Network has a variety of articles and tip sheets on NF1, including:
Tools are available to help patients locate NF1 doctors throughout the US. See the Children’s Tumor Foundation and the NF Network for more.

Looking for an NF1 ICD-10 code?

The following codes may be appropriate to describe a patient diagnosed with NF1 and associated PNs.1

Q85.01

Neurofibromatosis, type 1

NF1-associated PNs

D33.3

Benign neoplasm of cranial nerves

D36.10

Benign neoplasm of peripheral nerves and autonomic nervous system, unspecified

D36.11

Benign neoplasm of peripheral nerves and autonomic nervous system of face, head, and neck

D36.12

Benign neoplasm of peripheral nerves and autonomic nervous system, upper limb, including shoulder

D36.13

Benign neoplasm of peripheral nerves and autonomic nervous system of lower limb, including hip

D36.14

Benign neoplasm of peripheral nerves and autonomic nervous system of thorax

D36.15

Benign neoplasm of peripheral nerves and autonomic nervous system of abdomen

D36.16

Benign neoplasm of peripheral nerves and autonomic nervous system of pelvis

D36.17

Benign neoplasm of peripheral nerves and autonomic nervous system of trunk, unspecified

NF advocacy groups*​

There are a number of advocacy groups that can provide information and support for those living with or caring for someone with NF1-PN.

*

SpringWorks Therapeutics is providing these websites and resources to help patients find more information about NF1-PN, but their inclusion does not represent an endorsement or a recommendation from SpringWorks Therapeutics for any group or organization. Any group listed is independent of SpringWorks Therapeutics.

SpringWorks Therapeutics is providing these websites and resources to help patients find an NF specialist by region, but SpringWorks Therapeutics had no role in their development. Their inclusion on this website does not represent an endorsement or a recommendation from SpringWorks Therapeutics for any center or physician.

  1. ICD-10-CM tabular list of disease and injuries. Centers for Medicare and Medicaid Services. Updated February 1, 2024. Accessed March 25, 2024. https://www.cms.gov/files/zip/2024-code-tables-tabular-and-index-updated-02/02/2024.zip