Celebs With Extremely Rare Medical Conditions

Flying high off the success of her sophomore album "Happier Than Ever," Billie Eilish has used her platform to raise awareness of synesthesia, a rare medical condition that causes people to "hear colors, feel sounds and taste shapes" according to Scientific American.

During an August 2021 appearance on "The Tonight Show" to promote her new album, the Grammy-winning artist discussed her synesthesia, telling host Jimmy Fallon that she perceives him as a "vertical brown rectangle." Interestingly, the condition runs in Eilish's family. "I don't know why it exists. But my brother has it. I have it. My dad has it. ... It's a thing in your brain where you associate random stuff to everything," she explained. "So for instance, every day of the week has a color, a number, a shape." She went on to add that the condition is central to her creative process: "It inspires a bunch of stuff. So, like, all of my videos for the most part have to do with synesthesia, all of my artwork— everything I do live."

To wit, Eilish unveiled the Billie Eilish Experience in 2019. The museum exhibit was designed to showcase "the sights, smells, and sensations" of her "When We All Fall Asleep, Where Do We Go?" album across "14 unique rooms," all curated by the singer herself. To celebrate the gallery opening, Eilish posted a slide show on Instagram, and described it as "a space in which [she] could really show [fans] the way [she] see things." 

The ABC Family drama "Switched at Birth" has been lauded as an exemplar of deaf representation, being "the first American television show to feature multiple deaf characters and deaf actors front and center, not relegating them to the sidelines or to procedural subplots," as written in The Daily Beast. 

Like her "Switched at Birth" character, Katie Leclerc has Meniere's disease, an inner ear condition that affects approximately "0.2 percent of the U.S. population", as per the American Hearing Research Foundation. In an interview with Women's Health, Leclerc explained, "My ears are full probably 60 percent of the time, where you feel like you have to pop them. There's lots of pressure. Probably 60 percent of the time I get a severe head rush, like when you stand up too quickly."

As Leclerc suggests, Meniere's is closely associated with vertigo, which, according to a 2008 study in "The Lancet", is one of its main complications, along with "fluctuating sensorineural hearing loss." However, regardless of the potential severity of the disease, the actor has spoken of the importance of a sanguine outlook towards Meniere's. "I try to approach everything with positivity," she told Self, adding, "You live in the moment, day to day. My sister also has the disease, and it hasn't stopped her — she's an inspiration to me."

British actor Adam Pearson is best known for his role alongside Scarlett Johansson in the 2013 sci-fi film "Under the Skin." Pearson has neurofibromatosis type 1, which causes anything from typically non-cancerous growths "on or under the skin," to issues with the eyes, "bone deformities," "learning disorders," and more, per the Mayo Clinic.

Speaking with The Guardian, Pearson emphasized the significance of representation, which contributed to his decision to pursue an acting career: "There's a lot of fear around the unknown. If I can try to be as normal as possible and show there's nothing to fear — either on film or day to day, going round the corner to go shopping for milk — then the more people see it in wider society, the less stigma there is."

"Under the Skin" has been upheld as an example of challenging traditional beauty standards. Johansson plays an alien in the film; as such, her character is not inculcated with the same beauty standards as the human world she intercepts. For instance, she does not perceive Pearson's character as any different to the other men she encounters. As Pearson notes in his Guardian interview, "One of the main reasons for taking the role was because it was so moving and honest. For me, the film is about what the world looks like without knowledge and without prejudice."

Pearson is also a passionate campaigner against hate crime, having presented the BBC documentary "The Ugly Face of Disability Hate Crime."

Cleidocranial Dysplasia (CCD) is an extremely rare disorder that occurs in "about one in 1 million people" according to John Hopkins Medicine, which describes the condition thusly: "The bones in people with CCD might be formed differently or might be more fragile than normal... Skull and collarbone abnormalities, along with dental abnormalities, are the main features of CCD."

"Stranger Things" star Gaten Matarazzo has the condition, which affects the formation of his teeth and bones. During a 2018 appearance on "The Doctors," Matarazzo opened up about having already had "two surgeries and four extractions [of extra teeth]." He also shared the stigma he faced when trying to secure acting roles: "It's one of the biggest reasons why I [hadn't] been getting roles, because of my lisp, and the teeth situation, and my height."

In 2020, he underwent another surgery to remove extra teeth. "The surgery was a complete success," he wrote on Instagram, adding, "Those who suffer from Cleidocranial Dysplasia usually have Supernumerary teeth, which are extra teeth that grow in the gums. I've had several surgeries to extract these teeth from within my gums and help expose the teeth that should have already grown in considering my age. In this surgery, the team of amazing medical professionals extracted 14 supernumerary teeth and exposed six of my adult teeth."

Danny DeVito was born with multiple epiphyseal dysplasia, also known as Fairbank's disease, which is an uncommon form of dwarfism affecting "1 in 10,000 to 1 in 20,000 people," per the Journal of the American Academy of Orthopaedic Surgeons. 

As reported in the The Guardian, "being short only felt like a disadvantage as a teenager" for DeVito, who described his height to the outlet as "five foot nothing." But the actor was then able to champion his uniqueness to his advantage. DeVito's distinct characteristics distinguished him from his outwardly conventional peers, thereby enabling him to secure momentous acting roles.

"Because I wasn't so average. Early on, when I'd go in for a part, people would go, 'Oh'. [Interested stare.]," he told The Guardian, adding, "Later, when they rewind that meeting, it would be, 'We've seen 20 actors for the role of the servant in The Merry Wives of Windsor, but wait a minute, we've done this already with this guy, so let's try this Danny guy.' I got two Shakespeare parts like that."

As Los Angeles Magazine noted in a laid-back interview with DeVito, "Fairbank's disease might have prematurely stopped his vertical growth, but he blossomed in virtually every other way."

British tennis star Francesca Jones has a career high ranking of no. 167, as per the International Tennis Federation. BBC Sport reports that Jones was "born with three fingers and a thumb on each hand, three toes on her right foot and four toes on her left." This is due to a rare medical condition called ectrodactyly ectodermal dysplasia syndrome, which Frontiers in Pediatrics says affects "around 1 in 90,000 in population" and is thought "to be caused by mutation in TP63 gene." Other symptoms of the condition are "malformations" of the "hands and feet," as well as "cleft lip and/or palate." 

For Jones, embracing her differences is vital. "The way I see it is that I am just playing the game with a different set of cards," she told BBC Sport. "But it doesn't mean those cards still can't win the game."

Having experienced prejudice as a child, Jones wants to encourage children with similar conditions to never give up on their dreams in spite of others' bigotry. "When someone does say to you at eight, nine years old that you can't do something... I just tried to take it on the chin and see how I could prove that person wrong," she recalled, continuing, "And also prove to myself that I could do what I wanted to, and encourage others to do so too, because I think there are so many children that are limited by what others say."

While panic attacks are fairly common, they can lead to agoraphobia, a rare but severe complication characterized by a fear of public spaces. A 2020 study published by Europe PMC states that "agoraphobia is present in approximately 1.7% of the general population."

In a 2001 installment of the America Undercover docuseries, titled "Panic: A Film About Coping," actor Kim Basinger discussed her agoraphobia, recounting a panic attack that led to her rushing out of a health food store, driving home, "and not leaving for six months."

Following her divorce from Alec Baldwin, Basinger's brother-in-law, Billy Baldwin, made some problematic statements to the New York Post in 2007. "One minute she could be very loving and caring and familiar... Then in the next breath, it all went bizarre... I don't know where agoraphobia begins and narcissism ends," he told the publication. His comments underscore the stigma associated with mental health disorders, particularly ones as rare as agoraphobia. Basinger's spokeswoman, Annette Wolf, refuted Baldwin's specific remarks about her client's condition, and added that Basinger had been treated for the disorder.

Six years later, Basinger opened up to Vanity Fair about her agoraphobia, revealing that she's found ways to carry on with the condition outside of medication. The outlet noted that Basinger even confronted her fears head-on by going "sky-diving with her teenage daughter." In her own words, Basinger said, "I wanted to face everything I was afraid of." 

If you or someone you know is struggling with mental health, please contact the Crisis Text Line by texting HOME to 741741, call the National Alliance on Mental Illness helpline at 1-800-950-NAMI (6264), or visit the National Institute of Mental Health website.