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Helpful NF1-PN resources
It helps to have support specifically for my condition.
– Vanessa, living with NF1-PN
Guiding you along the way
The information and resources below have been provided to help you navigate neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) and its care.
Videos
Meet Antwan
He’s 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 your 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 your condition
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
NF1-PN Discussion Guide
Make the most out of conversations with your healthcare provider by tracking your symptoms between visits and being prepared with questions to ask.
Helpful guides from the Children's Tumor Foundation*
Helpful guides from the NF Network*
Help finding an NF1 doctor†
If you’re having trouble finding a doctor who is familiar with NF1, these websites feature tools that can help you locate doctors throughout the US.
*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 organization 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.