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.
My Pink Hair Was Banned at Work, So I Started Showing Up With “Terrible Wigs”
Following a job offer, a 29-year-old woman faced a huge dilemma. She was given an ultimatum: conceal her pink hair or seek employment elsewhere. Embracing the challenge, she devised a clever solution to the restriction, sparking widespread attention online.
Emily Benschoter turned to TikTok to share her journey at her new workplace, but with the twist that she can never show her pink hair while she’s on duty. She only found out the fact after she had already been interviewed and offered the position, a front-of-house role in the hospitality industry, because there was no prior contact with her employers in person or over video chat during the hiring process.
Her manager then suggested she wear a wig and that’s when she decided to pick the funniest ones she could find. Her first TikTok video with the first wig went up on July 19, 2023, and it read: «When you have pink hair, but corporate does not approve, so you wear terrible wigs.»
Since then, people have become invested in her wig choices and her clips have been viewed millions of times. «The worse the wig, the better,» she admitted in an interview. «It is a way to open up the conversation with the customers who think it is insane that I have to cover my pink hair.»
In the same interview, Benschoter also took time to explain why she didn’t just simply dye her hair instead. «Dying my hair for a job I work at for 40 hours per week wasn’t an option,» she revealed. «I am a self-expressive person and I feel very confident with pink hair, so I came up with a solution to keep the job and my hair.»
Despite her having fun with the situation, she doesn’t approve of it. «It’s dehumanizing that I can’t be accepted at face value because my hair is a non-traditional color,» she said. «It’s so superficial that my hair color is an obstacle.»
Not surprisingly, this isn’t the first time someone goes viral on social media because of hair trouble. A different woman also went viral on TikTok after a visit to the hairdresser went wrong. She ended up leaving the salon with a disastrous blowout and the before-and-after photos prompted a massive reaction from folks online. See the photos here.
Preview photo credit emuhleeebee / TikTok, emuhleeebee / TikTok
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