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.
Anne Hathaway Reveals an Incident That Made Her Choose Sobriety as She Celebrates 5-Year Milestone
Anne Hathaway achieved a significant milestone in her journey of maintaining sobriety. The 41-year-old actress revealed that she has been living a healthy lifestyle for five years. Hathaway also expressed her joy about reaching this milestone and shared an incident that helped her break the bad habit.
Hathaway brought up her sobriety, when asked about her thoughts on middle age.
In her new movie, The Idea of You, Hathaway played Solène, a 40-year-old divorced mom who finds herself in a romance with a younger man—a singer in a boy band, played by Nicholas Galitzine. During an interview about her new role, she was questioned about her thoughts on middle age.
Hathaway responded, “I don’t take it seriously. There are so many other things I identify as milestones. I don’t normally talk about it, but I’m over five years sober. That feels like a milestone to me.” She admitted that this problem was probably a method she used to deal with physical stress caused by feeling disconnected from her body.
What about an age, the actress said she feels blessed to be her age, “40 feels like a gift. The fact of the matter is, I hesitate at calling things ‘middle age’ simply because I can be a semantic stickler and I could get hit by a car later today. We don’t know if this is middle age. We don’t know anything.”
She also revealed an incident that made her choose sobriety.
The actress from Princess Diariesexplained that her choice wasn’t a criticism of this particular habit. “I knew deep down it wasn’t for me,” she said, mentioning how hard it was to explain to people that she wasn’t drinking at all in the beginning.
Eventually, Hathaway had a realization that made her stop being tough on herself for her decision, “If you’re allergic to something or have an anaphylactic reaction to something, you don’t argue with it. So I stopped arguing with it,” the star said, making it clear that she doesn’t judge anyone.
Hathaway’s choice to start a healthy lifestyle came as she was adjusting to being a mom of two. Her oldest son Johnathan just turned 8, and youngest son Jack is 3 years old. The actress mentioned that she made this decision for the next 18 years while her sons live in her house.
Talking about her eldest son, she opened up about an incident that made her think about quitting the bad habit, “He’s getting to an age where he really does need me all the time in the mornings. I did one school run one day where I dropped him off at school, I wasn’t driving, but I was hungover, and that was enough for me. I didn’t love that one.”
The Oscar winning actress also decided to cut out other unhealthy habits from her life as much as possible, like social media. “I make a lot of my lifestyle choices in service of supporting mental health. I stopped participating in things that I know to be draining or can cause spirals. I actually don’t have a relationship with myself online,” Hathaway shared.
Other celebrities who have been open about their sobriety.
Bradley Cooper
Bradley Cooper has been sober since he was 29. In 2013, he said that he chose sobriety because he realized it was going to ruin his life if he kept going. In 2023, Cooper expressed gratitude for overcoming his bad habits, saying he feels “very lucky.”
Tom Holland
Tom Holland mentioned that he’s the “happiest I’ve ever been in my life” since he started his journey of sobriety. Holland admitted he definitely had a problem, “I was really, really struggling, and I started to really worry that maybe I had a problem. So I decided that I would wait until my birthday, which is June 1. I said to myself, ’If I can do six months without it, then I can prove to myself that I don’t have a problem.’ And by the time I got to June 1, I was the happiest I’ve ever been in my life.”
Jessica Simpson
Jessica Simpson decided to become sober so she could be there for her kids, “I was at a place, and I was missing out on moments with my children, and then they were seeing me, and they were very confused.”
“I just wanted to be present and have clarity and be a good role model for my children, because I always wanted to be a good role model for the world,” she explained her decision.
Daniel Radcliffe
Daniel Radcliffe struggled a lot during the filming of the Harry Potter movies. In the interview in 2015, Radcliffe talked about his battle, “There was a period when I was transitioning out of ’Potter’ and entering the real world, where suddenly I didn’t have that stability anymore. I was quite distraught on the final day of ’Potter.’ I was really anxious. I was living by myself, and I think I was really scared.”
Lana Del Rey
In a 2012 interview, Lana Del Rey revealed her teenage battles, “That’s really why I got sent to boarding school aged 14. I knew it was a problem when I liked it more than I liked doing anything else.”
Anne Hathaway revealed the heartbreaking reason why she lost roles after an Oscar win. Click here to know the details.
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