‘A Different Man’ Actor, With Rare Genetic Condition Causing Tumors On His Body, Says Film Writing About Disabled People is ‘Lazy’

“Normally there are three kinds of roles or tropes or stereotypes, whatever vernacular one wants to use. There’s either the villain, that because I have a disfigurement, I want to kill Batman or James Bond. Then there’s the victim, the ‘woe is me,’ small violin,” Pearson told Variety Magazine this month.

“And then there’s the hero, that because I have a disfigurement but do regular dude stuff, whatever regular dude stuff is, I’m somehow braver than the average guy.”

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Pearson dubbed the stereotypical castings as “lazy writing,” and asked, “Why are non-disabled people writing about disability without consultation?”

He explained, “Because when that happens, the end result you might get it right once but nine times out of 10 it’s going to be really inauthentic and inaccurate and serve not only the disabled community accordingly but disabled cinema lovers accordingly.”

@varietymagazine

“Why are non-disabled people writing about disability without consultation?” #ADifferentMan actor Adam Pearson speaks out against the tropes and stereotypes he normally sees in roles offered to disabled actors. | Variety Studio presented by @Audible

♬ original sound – Variety

Speaking about the rare genetic condition he lives with during an earlier interview with LADBible, Pearson said, “I was diagnosed with my condition, type-1 neurofibromatosis at the age of five. I was messing around in my room one night, pretending to be Hulk Hogan, and kind of bounced my head off the windowsill.”

He recounted how his parents ran up to see what happened and noticed a “bump,” which they iced it and it went away. However, after Pearson had hit his head in his room a second time, the bump didn’t go away with ice, prompting them to seek advice from doctors, leading to his diagnosis.

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“It’s a genetic condition that affects one in every 2,300 births in the U.K,” he said. According to the National Cancer Institute, neurofibromatosis type 1 (NF1), which Pearson has, “is a common genetic disorder of deregulated cell growth, affecting approximately 100,000 Americans.”

Pearson continued, “What it means is that your nerve tissues grow exponentially.”

He also pointed out that “there’s no one-size-fits all for the condition” as many of the people he’s met who also have NF “present very differently.”

“These tumors can occur anywhere on the human body, it just so happens that most of mine are one my face and upper torso,” Pearson explained. “So it really is just a random chance thing. It’s the beauty and chaos of genetics all at the same time.”

As for how he views how people with disabilities are treated in the TV industry, he told LADBible, “I can say, categorically, that the TV industry has served the disabled community, both onscreen and offscreen completely terrible, and there is a real problem with systemic ableism, in film and TV.

Understanding Neurofibromatosis (NF)

According to the National Genome Human Research Institute, neurofibromatosis (NF) is a genetic neurological disorder that can affect the brain, spinal cord, nerves and skin. It causes tumors, or neurofibromas, to grow near the body’s nerves or on, or under, the skin.

The institute explains, “Scientists have classified NF into two distinct types: neurofibromatosis type 1 (NF1) and NF2. NF1, formerly known as von Recklinghausen’s NF, is the more common of the types. It occurs in approximately 1 in 4,000 births.

“NF2, also referred to as bilateral acoustic NF, central NF or vestibular NF, occurs less frequently- 1 in 40,000 births. Occurrences of NF1 and NF2 are present among all racial groups and affect both sexes equally.”

The tumors, which can be seen on Adam Pearson’s face, occur from changes in the nerve and skin cells.

“Tumors also may press on the body’s vital areas as their size increases. NF may lead to developmental abnormalities and/or increased chances of having learning disabilities,” the institute adds. “Other forms of NF, where the symptoms are not consistent with that of NF1 or NF2, have been observed. A rare form of NF is schwannomatosis. However, the genetic cause of this form of NF has not been found.”

As for treatment of this rare genetic disorder, which has no cure (for both NF1 and NF2), surgery may help with removing tumors, however the tumors could regenerate.

As for other forms of treatment, the institute explains, “For optic gliomas, treatment may include surgery and/or radiation. For scoliosis, treatment may include surgery or back braces. For symptoms associated with NF2, surgery may be a viable option, however not without complications that could result in additional loss of hearing or deafness. Hearing aids are ineffective when parts of the auditory nerve are removed.

“A breakthrough in treatment became available recently to NF2 patients, when the Food and Drug Administration approved an Auditory Brainstem Implant [fda.gov] for those who have parts of their auditory nerve removed and have suffered from subsequent hearing loss. The implant transmits sound signals to the brain directly and allows people to hear certain sounds and speech. Radiation treatment, may also help relieve symptoms associated with NF2.”

Resilience Through Adversity

SurvivorNet specializes in covering the lives of people who overcome seemingly insurmountable obstacles, like Adam Pearson is doing in the world of film. Often, seeing the positive helps them maintain their resilience.

Dr. Zuri Murrell, an oncologist at Cedars-Sinai Medical Center, spoke to SurvivorNet about the role of a positive outlook on survival rates: “I’m pretty good at telling what kind of patient are going to still have this attitude and probably going to live the longest, even with bad, bad disease. And those are patients who, they have gratitude in life.”

Resilience: Staying Positive Despite Adversity

Meanwhile, resilience is an important trait, but not the easiest to build. When building resilience, the ultimate goal is not to avoid tough times, but to be able to bounce back from them. And yet, when they are faced with an overwhelming, life-changing situation, how do people shift their view? How do they learn to see the problem as temporary, rather than permanent, and figure out a solution?

It’s complicated, because building resilience is more about your mental and emotional fortitude than anything else. According to the American Psychological Association, “the resources and skills associated with more positive adaptation (i.e., greater resilience) can be cultivated and practiced.” In other words, resilience is not something you’re born with, which should be encouraging. Instead, after every challenge in your life, you build more and more resilience to those hard times.

Building resilience is down in the same way you build muscle through patience and steady exercise of the skill. Some lessons learned from other cancer warriors SurvivorNet has covered include being willing to learn, spending time with people who inspire you, allowing yourself to grieve, being flexible, and leaning in to your community for support.

Have a Rare Disease? Here are Some Resources

All sorts of feelings of anxiety, fear, and loneliness can come with the diagnosis of a rare disease. But it’s important to know you’re not alone. Below are some helpful resources for the many people affected by lesser-known or less-researched diseases.

Academic Centers and Comprehensive Care Centers

For some rare disease warriors, community centers provide great treatment options. But for people with rare conditions, cancer or otherwise, more specialized care may be required. In that case, the most effective place to find a specialist is often at academic centers and comprehensive care centers.

In a previous conversation with SurvivorNet, Dr. Kenneth Miller, director of outpatient oncology at the University of Maryland’s comprehensive cancer center, explained what differentiates a “comprehensive cancer center” from other treatment providers.

Seeking Care at a Comprehensive Cancer Center

“Pretty much automatically, there’s going to be a team approach [to your care],” Dr. Miller said. “Surgical oncology, medical oncology, radiation oncology, and all the support services, and also wonderful pathology and radiology.”

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Dr. Miller added that at a comprehensive cancer center, all of these different specialists work together as a team to help you find the best course of treatment for your specific kind of cancer.

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“We call it a tumor board, a group to go through all the details of your case so you get a group of very smart people coming up with a plan together that is hopefully optimal and gives you the best chance of doing well.”

Clinicaltrials.gov and the SurvivorNet Clinical Trial Finder

Another place to turn to when you’ve been diagnosed with a rare disease and you’re considering experimental treatment )or trying to find specialists) is clinicaltrials.gov, a database maintained by the U.S. government that compiles privately and publicly funded clinical trials conducted around the world.

Clinical trials themselves are research studies that compare the most effective known treatment for a specific type or stage of a disease with a new approach.

Clinical Trials Can be Life-Saving for Some

Clinicaltrials.gov can help you explore possible treatment options by looking at trials that are actively recruiting. The site also provides the information of some of the most specialized doctors in a specific field since they often end up leading clinical trials that advance our understanding of diseases.

By searching your disease on Clinicaltrials.gov, you will usually come across a list of many studies. The lead researcher will be listed under the heading, “Investigators.” Lead researchers in studies on rare diseases are typically doctors who have specialized in the study of that condition.

And if you’d prefer to search for clinical trials on a more user-friendly site, try SurvivorNet’s new A.I. driven tool built on top of clinicaltrials.gov: the SurvivorNet Clinical Trial Finder. This tool is updated daily and gives users access to more than 100,000+ individual clinical trials to help them find treatment options.

To use the SurvivorNet Clinical Trial Finder, simply answer some basic questions using our custom-designed chat feature and we’ll send clinical trial options within your region right to your email. In simplifying the search, we hope to offer multiple opportunities for clinical trial sponsors and clinical research organizations to engage with patients.

“Clinical trials are critical to the development of new therapies, and as we live through this extraordinary revolution in genomics, immunotherapy and targeted therapy, it’s clear that one of the most pressing needs for patients, clinical trials sponsors, and researchers is simply a better way to find patients,” SurvivorNet CEO Steve Alperin said. “Even one percent more people successfully enrolled in clinical trials can change the world.”

PubMed

Similar to clinicaltrials.gov, PubMed is another place to turn if you’re looking to research your rare disease. This website includes more than 33 million citations for biomedical literature from MEDLINE, life science journals, and online books.

If you type in your disease, you’ll see a list of studies and articles about the condition. You can even add a filter to only look at clinical trial information. By looking at the doctors associated with the published clinical trial results and other articles, you may be able to find doctors that specialize in research for your disease.

Newly-Developed Drugs

For those who’ve been recently diagnosed with a rare disease, we also want to highlight reasons for hope since there is something of a revolution going on in the development of drugs for rare diseases.

The sequencing of the human genome has enabled doctors to take new approaches to treating some of these uncommon conditions. One step you may take after being diagnosed with a rare disease is looking into the drug companies developing drugs to treat your condition.

Compassionate Use and Off-Label Use

Drug companies may be able to help patients enroll in clinical trials, and in some rare cases, they may even be able to offer “compassionate use.” Compassionate drug use makes a new drug that has not been fully approved available to a patient facing a serious illness. This only typically happens when a patient has exhausted all other treatment options, but it is an important option to understand.

Similarly, researching drug companies may be a path to “off-label” drug use. Off-label drug use involves taking a drug that has been approved for treating one condition in the hopes that it may treat another condition that it has not yet been approved for.

Building Support, Staying Connected

If you were recently diagnosed with cancer or a rare disease, or a rare genetic condition like Adam Pearson at a young age, you likely know about the wide range of emotions that news can bring.

This is one of the most difficult phases of a health journey to overcome.

However, it’s during these early stages that a team of supporters can be most useful. Your supporters can be made up of close family members and friends. Your support group can also be filled with people from outside your inner circle.

“Some people don’t need to go outside of their family and friends circle. They feel like they have enough support there,” New York-based psychiatrist Dr. Lori Plutchik tells SurvivorNet.

“But for people who feel like they need a little bit more, it is important to reach out to a mental health professional.” she added.

One of the benefits of having supporters includes helping alleviate stress and anxiety following your diagnosis. Supporters can also help advocate for you during treatment.

Sometimes it is not always easy to share news you have cancer even among loved ones. In instances like these, you can seek out a trained professional to center your support group around. Mental health professionals can help fill this space because many are trained to help you navigate your cancer treatment.

“Make sure that the mental health professional that you work it is reaching out, with your consent, to the rest of your team, to the oncologist, to the surgeon, it can also be helpful to reach out to family, friends, and any other caretakers that may be involved in the person’s treatment,” Dr. Plutchik said.

WATCH: Seeking support after a diagnosis.

Dr. Plutchki recommends cancer patients consider the following three steps to get the help you need after a diagnosis:

• Step #1: Seek additional support if you need it (this could mean speaking to a mental health professional or seeking out a support group)
• Step #2: Look for a mental health professional who has experience helping people in your situation.
• Step #3: Keep your care team connected this may include your friends and loved ones, your therapist, and the doctors who are treating your cancer.

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Contributing: SurvivorNet Staff

Learn more about SurvivorNet's rigorous medical review process.

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