Jesús Aceves has hypertrichosis, which makes his hair grow abundantly over his face and back. Because of his condition, he’s also known as The Wolf Man. But he’s tired of this alias and wants to live a normal life.
Meet Jesús Aceves, a 55-year-old man born with a condition called hypertrichosis, which means he has abnormal hair growth over his body, especially his face. Although married with kids, Jesús isn’t fully happy with his living conditions. He says he and his family suffer discrimination. In an interview, one of his kids mentioned, “People call me names, and they even tell their kids not to be my friends.”
© Chuy, El hombre lobo / Chuy, The Wolf Man / Facebook
He worked in the circus all his life, traveling through several cities. But now, he’s tired of being seen as a freak. As a consequence of years on the road, he’s been known as The Wolf Man.
Back home and not in the circus anymore, he’s facing another challenge: finding a “normal” job. He needs to support his family since his wife works in temporary jobs.
After several failed job interviews, he agreed to try something he had always avoided: shave his face. He relied on his family barber to transform him, even creating eyebrows and lashes.
The experience was difficult since the face is an extremely sensitive body area, but both he and his wife believed that simply by shaving, he would be able to find a job.
Jesús did several interviews, and it’s confident that now he’ll find somewhere to work besides the circus. If this happens, he must shave his face every 2 days.
Although rare, some conditions aren’t impossible to have. Luckily, people find a way to overcome the difficulties a rare condition brings and strive in life. Hannah Tyre, for example, was born with osteogenesis imperfecta, meaning that her bones break very easily. But her love for makeup made her an internet influencer, reaching millions of followers. We hope that, by reaching the mainstream media, people with genetic diseases won’t suffer more discrimination.
Céline Dion Shares Raw Video of Stiff-Person Syndrome Crisis in Never-Seen Footage from New Documentary
In a devastating moment from “I Am: Céline Dion,” the famous person battles through an unexpected and horrifying SPS episode.
Fans are getting an unheard-of glimpse inside Céline Dion’s tribulations during the last few years of her life.
After being diagnosed with stiff-person syndrome in August 2022, the 56-year-old superstar tentatively but proudly returns to the recording studio in a devastating sequence towards the end of her new documentary, I Am: Céline Dion (available for streaming globally on Prime Video).
Shortly after, as part of her continuous treatment regimen, she makes her way to physical therapy and her foot starts to hurt.
Dion’s body locks up, indicating that she is in severe agony while her care team gives her a diazepam nasal spray during the SPS crisis episode. One of her teammates says, “We’ll do a 9-1-1 if she goes back into a spasm.”
In the movie, Dion subsequently remarks, “Every time something like this happens, it makes you feel so embarrassed.” “I’m not sure how to say it. You know that you dislike losing control of yourself?
The five-time Grammy winner thought back on the horrifying moment that director Irene Taylor’s crew captured on camera during her PEOPLE cover interview.
“Overstimulation—whether it be happiness, sadness, sound, or a surprise—can put me into a crisis—that’s one part of the [SPS] condition,” Dion explains, adding that she “did not see” the crisis episode coming that day. “Before something triggered, I was fine.”
Taylor’s understanding of the condition deepened when she was “two feet away” from Dion during the crisis.
Taylor remarks, “That was really amazing, not just for Céline to go through it, but for me to see as well.” “I continued to film because that is how I work, and I thought we would decide later whether or not to incorporate that into the movie.”
Dion and Taylor had developed a close relationship by the time the movie was in post-production, and according to Taylor, “I knew that putting it in the film was really not a risk because she believed in me at that point.” “I really can only thank her for that because she is an open book, was there, and didn’t hold anything back.”
Dion is attempting to humanize the uncommon illness through the movie and contribute to fund-raising efforts for scientific studies in the pursuit of a solution.
Neuropathy has a very broad spectrum. For this reason, I’m making a lot of effort to raise money so that people can speak with their husbands, friends, or neighbors about it,” Dion explains.
Adds Dr. Amanda Piquet, the doctor who diagnosed Dion and director of the University of Colorado Anschutz Medical Campus’s program on autoimmune neurology: “There are many exciting things in store for SPS, and the future looks bright.”
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