If you haven’t heard of neurofibromatosis (NF), you’re in surprisingly good company.
For most of her life, Rachel Mindrup, an artist, illustrator, and Resident Assistant Professor at Creighton University, who has painted over 150 portraits of people with neurofibromatosis, hadn’t heard of it either. This changed when her, son Henry, was diagnosed with NF at four months old.
While NF is considered a rare disorder, within the rare umbrella, it’s actually pretty common. About one in three thousand people has it, which means that although it’s not exactly ubiquitous, you probably have met someone who it affects. According to Washington University Physicians NF Center, it’s more frequently occuring than cystic fibrosis, hereditary muscular dystrophy, Huntington’s disease and Tay Sachs combined. However, there’s not a lot of awareness surrounding it. People like Rachel are working on making this condition known and giving it a face— or rather, giving it over 150 different faces.
When we reached out to Rachel, she stressed the urgency of this mission. Because it’s a relatively unknown condition, it’s hard for NF to get the research funding that could help advance treatment.
“My son has brain tumors,” she explained. “I don’t have time to mess around.”
What exactly is Neurofibromatosis?
Neurofibromatosis refers to a group of genetic disorders that cause tumors to form throughout the body. The tumors aren’t necessarily cancerous, although in some cases, they can be. However, they still cause many different symptoms, which vary widely between patients. There are three main forms of NF— NF1, NF2, and schwannomatosis– but even within those types, people have drastically different experiences. Some possible symptoms include vision problems, hearing problems, intellectual disability, and skin changes. Some patients will have a significantly reduced lifespan, while others will not. Right now, there’s no cure, or even sufficient treatment available, but various organizations are working on changing this.
Rachel and Henry’s story
Henry was diagnosed after his doctor noticed the cafe-au-lait spots on his skin, which are light brown marks that can occur in people with NF. The doctor told Rachel not to google the disorder, but rather go on raising her son as usual. That’s a hard request for a parent to follow. She went home and read all of the possible things NF could mean for Henry. After the initial stages of fear and grief, she decided to heed the advice and raise Henry as if everything was normal. She didn’t want NF to be a defining aspect of her son.
This went okay at first, but when Henry was two years old, doctors discovered a tumor on his optic nerve, which launched the family into an arduous journey of MRIs, sedation, and long days at the hospital. Additionally, Henry started missing milestones, experiencing cognitive delay, and having trouble with gross and fine motor skills.
Still, when Henry started school, his parents felt that it was best not to mention his condition. They hoped that if they made an effort to keep him up to speed, they could prevent him from being labeled or treated differently. Before the end of kindergarten, Henry’s teacher and principal called a meeting with Rachel and her husband to discuss why he was having issues with certain tasks in school. When Rachel confessed that he had a genetic disorder, the principal was irritated that she had kept this from them. He asked, “How can we help your son if you don’t let us help your son?”
This meeting shifted Rachel’s mindset, and led the way for Henry to start getting more assistance in school. However, the family found that since most people weren’t familiar with NF, it was difficult to find people who knew how to accommodate it. This is when Rachel knew that she didn’t want to hide NF, but rather raise awareness to make it more visible and better understood.
The”Many Faces of NF” project
When she reached out to NF organizations, she was sent pamphlets that outlined conventional methods of raising funds and awareness— mostly they seemed geared towards people who enjoy running. While marathons are a great method of raising awareness for some people, they just weren’t really Rachel’s thing. She started connecting with other people in the NF community, including Reggie Bibs, the man behind the Just Ask Foundation.
One way Reggie, who has visible tumors, promotes open conversation around NF is by wearing a t-shirt that says “Just Ask,” encouraging people to learn about and discuss the disorder. Rachel, who admired the way that Reggie took ownership of the condition rather than trying to hide it away, decided to paint a quick watercolor portrait of him in appreciation of him.
Reggie loved the painting and made it his profile picture on Facebook. He also pointed Rachel towards another friend raising NF awareness. One painting led to another, and all of a sudden, what had begun as a one watercolor portrait had exploded into a whole project, spreading throughout Facebook.
As more and more people sent in requests, Rachel established some ground rules— she would paint portraits for people who sent her receipts of donations to NF charities. She’s still doing it, and has found a way to raise both awareness and a pretty large sum of funds to benefit both her son and others with NF.
Additionally, she selected a few people from the NF community to honor through portraits in oil. She works in collaboration with the people she features, and captures them doing everyday things— drinking coffee, playing sports. The people she paints send their own photos and write their own bios to be featured alongside her. They choose how they want to feature and frame NF and its role in their life, which differs for each person. Some people decide to discuss the way its defined their experience, whereas others prefer to discuss other aspects of themselves. The process is a collaborative effort, and at this point, she has painted about 55 oil portraits.
One thing Rachel has noticed is that although many people viewing her paintings haven’t heard of NF before, the condition is often still familiar to them— they may recognize symptoms that they’ve seen in a cousin or neighbor, but had never had a name for. Because NF varies so widely, it’s hard to raise attention for— it’s not one thing, it’s a manifestation of many different things. It creates a unique set of symptoms and experiences in each person it touches, which makes it very hard to pin down.
“I can’t show you a picture of my son and say that’s what NF looks like, or show you a picture of Reggie and say, well that’s what NF looks like,” Rachel says in her artist talk at Creighton University’s Lied Art Gallery in Omaha, Nebraska, which you can see here.
“You have to see all the portraits collectively to realize there is no portrait of NF.”
As for Henry, he’s now in 9th grade. He’s fine with his diagnosis; Rachel jokes that because of the project, he now feels like NF is something that maybe half the world has. He wants to be a meteorologist when he grows up, loves using his pocket weather alert, and thinks that the portrait Rachel painted of him would have been better if she had included a tornado in the background.
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