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.
Emilia Clarke, 36, Gets Trolled for Her Aging Face in a Recent Selfie and Is Told to Use Fillers
The Game of Thrones actress, 36, looked positively radiant as she posted a fresh-faced snap on her Instagram, yet some people online criticized her for her aging face. Luckily, Emilia’s fans jumped into action to defend the stunning beauty, and they were quick to celebrate her all-natural look.
The actress shared an adorable selfie where she has minimal makeup on. The pic showed her grinning as she proudly held a mug her mom gifted her. But Emilia’s wholesome post soon gathered a number of negative comments.
One person wrote, “What’s happening with those hairs, they’re worse than mine right now.” While another added, “Big forehead and looks 50 years old now.” A third person continued to criticize Clarke for her all-natural features, and commented that she “hit a wall.”
In response, the actress’s fans rushed to shower her with compliments and defended her by saying, “It’s not cool to put someone down for aging!”
One fan wrote, “Thank you for laughing so much Emilia, you make the world brighter” and another commented, “This is by far the most beautiful woman in Hollywood.” Someone also gushed about Clarke’s stunning, all-natural features saying “Beautiful — actual smile lines in an IG pic.”
This is not the first time that the actress, who rose to fame at just 23 thanks to Game of Thrones, has received comments about her looks. In 2021, she recalled that, at only 28 years old, she was told by a facialist to get fillers.
Emilia then opened up about the dilemma we have to face as we grow older, saying, ’’You’ve got this idea of aging, and then you’ve got the idea of what aging makes you look like.’’
However, Clarke herself believes that those aging signs should be embraced and celebrated. She said, “At 34, I am wiser, more intelligent, I’ve had more experiences, I’ve done all this stuff, and I’m proud of that.” She then noted that, ’’You can only do that because you are the age you are.’’
The star went on explaining that looking older doesn’t bother her at all, saying, “If my face is gonna reflect the time that I’ve spent on this earth, I’m down for that.”
And just like Emilia, many famous women are refusing to have work done and are looking fabulous as they embrace their wrinkles and gray hair. Having said that, other celebrities have admitted to having had plastic surgery, and they have zero regrets about their decision.
And we celebrate all these women equally. After all, we should all do what brings us comfort and happiness because feeling good in our own skin is what matters most.
Preview photo credit emilia_clarke / Instagram, emilia_clarke / Instagram
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