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.”
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.
Preview photo credit A True Story / Youtube
Meet Twins with the Rare Benjamin Button Syndrome, Who Became Symbols of Resilience
In a small Brazilian town, there resides an extraordinary duo of identical twins named Elis and Eloá. Their story serves as a beacon of resilience and the remarkable power of the human spirit. Afflicted with Hutchinson-Gilford Progeria Syndrome, a rare and fatal genetic disorder causing accelerated aging, these twins confront their adversities with remarkable grace and strength, earning admiration from people worldwide.
Understanding Hutchinson-Gilford Progeria syndrome
HGPS stands as an exceptionally rare disorder, impacting roughly 1 in 20 million newborns globally. Marked by rapid aging from early childhood, individuals with progeria often display growth delays, diminished body fat and hair, prematurely aged skin, joint stiffness, and severe cardiovascular issues. Typically, those with HGPS have an average life expectancy of about 14.5 years, though some may extend into their late teens or early twenties. This syndrome gained public attention through the film The Curious Case of Benjamin Button.
The condition is caused by a mutation in the LMNA gene, which produces the lamin A protein responsible for maintaining the structural integrity of the cell nucleus. The mutation results in the production of an abnormal version of the protein, called progerin, which causes cells to become unstable and die prematurely.
Elis and Eloá’s journey
Elis and Eloá swiftly captured attention because of their distinctive medical condition. Despite the physical hurdles imposed by progeria, their contagious smiles and steadfast optimism have emerged as beacons of hope and inspiration. Guilherme and Elismar, the twins’ parents, have dedicated their lives to offering the utmost care for their daughters, striving to ensure they experience as normal a life as feasible within the confines of their condition.
The family’s path has been far from easy. Their daily life is filled with demanding medical routines, including physiotherapy, aimed at addressing joint stiffness and preserving mobility. Despite these challenges, Elis and Eloá approach each day with remarkable bravery and an unparalleled enthusiasm for life, which is truly remarkable.
A global community of support
Elis and Eloá’s narrative has touched hearts worldwide, sparking a surge of solidarity from individuals and groups committed to promoting awareness about progeria and backing research endeavors. The Progeria Research Foundation, a pivotal entity in this realm, has played a vital role in propelling research forward and furnishing assistance to families grappling with the condition.
Through social media platforms, the twins’ journey is shared with a broad audience, fostering a sense of community and solidarity. Their family’s updates, documenting both the highs and lows of their daily lives, provide invaluable insights into the realities of living with progeria, while also spreading a message of hope and perseverance.
Advances in research and hope for the future
In recent years, there have been remarkable advancements in comprehending and addressing progeria. A notable milestone occurred in 2020 when the U.S. Food and Drug Administration (FDA) granted approval for the first progeria treatment: lonafarnib. This medication has demonstrated efficacy in prolonging the lives of children with progeria by mitigating the accumulation of progerin in cells, thereby decelerating the disease’s advancement.
Though a cure remains elusive, ongoing research presents promising prospects. Scientists are delving into gene-editing methodologies, like CRISPR, as potential means to rectify the genetic mutation at its root. For families such as Elis and Eloá’s, these breakthroughs offer a ray of hope for the future.
And in our other article, we recounted the remarkable story of a girl born without a nose, affectionately dubbed “Voldemort,” who refuses to let her differences define her.
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