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.
“Roseanne” star Roseanne Barr, 70, looks “amazing” as she returns to Hollywood nearly five years after she was fired and “lost everything.”
Roseanne” star Roseanne Barr, 70, returned to Hollywood nearly five years after she was fired and “lost everything.”
She looks fantastic with long hair and makeup in a photo after flirting with Rihanna’s boyfriend, A$AP Rocky.
Barr revealed how TV daughter Sara Gilbert “destroyed” her life.
Roseanne Barr, the face of the hit show “Roseanne,” made a comeback. After a long time away from the spotlight, the actress has made her way back to Hollywood with a new comedy show titled, “Roseanne Barr: Cancel This!”
The actress also had some more excellent news after a new documentary on her long and intricate career was released. The return to show business comes after she made an insensitive comment about Valerie Jarrett, a presidential adviser back in 2018.
The comedy actress opened up after being canceled in 2018, saying she “lost everything.” The ordeal came just as her highly successful TV show was starting its reboot. After the comment, however, television executives decided the best course of action would be to cancel the reboot just as it started airing.
Barr also said it felt like a personal attack on her after her character was killed off.
But Barr refused to lie down. She opened up about the years after 2018, saying it was discouraging to be silenced wherever she went. She asked the studio executives for a chance to apologize and explain her actions, but they refused. She mentioned, “And they denied me the right to apologize.”
Luckily, Barr has gotten back up again and is being open about her experiences between 2018 and now. She has taken a step back from Twitter, investing in her Instagram presence instead. And fans have shown their support, saying, “You look fabulous Roseanne.”
Many users took to Barr’s comment section to show their support after the 70-year-old revealed her “makeup & long hair” look. One said, “You look absolutely AMAZING!!!!” In line with her new-found confidence, Barr sent A$AP Rocky a message, saying, “Call me when you get tired of Rihanna.”
Sara Gilbert, who played Barr’s on-screen daughter in “Roseanne,” also commented on the explosive Tweet.
Barr posed with her new hairdo and nails, smiling broadly in an Instagram post. She looked extremely happy to be back after the controversy, and Instagram users complimented her on the interview where the photo was taken.
How Did Roseanne Barr Feel after She Was Canceled?
Losing her job and being vilified by many people who used to be her fans and co-workers took its toll on Barr. She mentioned that she felt utterly alone. She noted it seemed to her as if she was being attacked from all sides by people who were jealous of her and who wanted to see her fall.
Gilbert was a considerable driving force behind the show’s reboot, and she corresponded with Barr to ensure she wanted to be a part of it.
Barr also said it felt like a personal attack on her after her character was killed off. To her, it was a message saying they didn’t want her around anymore and a direct dismissal of the work she did over the years. She commented:
“I’m the only person who’s lost everything, whose life’s work was stolen, stolen by people who I thought loved me.”
Although she has survived being canceled, Barr mentioned it was a terrible time. She described it as a “witch-burning” and as “terrifying” times in her life, noting, “I would die many times.” Although she’s glad to be back, she surely won’t forget the ordeal anytime soon.
What Did Sara Gilbert Do before Barr’s Cancellation?
After Barr’s controversial comments, numerous prominent Hollywood figures took to social media to show their disdain for her words. Everyone from Shonda Rhimes to congressman John Lewis criticized her, accusing her of being insensitive and urging her to apologize for what she said. But one accusatory comment left a deeper mark than the rest.
Sara Gilbert, who played Barr’s on-screen daughter in “Roseanne,” also commented on the explosive Tweet. Gilbert was a considerable driving force behind the show’s reboot, and she corresponded with Barr to ensure she wanted to be a part of it.
After Barr’s Tweet, however, Gilbert took to Instagram to express that the showrunners and the rest of the staff didn’t share the views expressed in the Tweet. Gilbert called the Tweet “abhorrent,” and mentioned that the TV show does not reflect what was implied in the Tweet. Barr responded to Gilbert’s statement:
“She destroyed the show and my life with that tweet. She will never get enough until she consumes my liver with a fine Chianti.”
Although Barr credited Gilbert’s statement for a large part of her downfall, Gilbert replied that her intentions were never to harm the actress. Instead, she mentioned that the show’s ending was heartbreaking for her, and she will always think of Barr as family.
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