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.
Why Michael Jackson Wore Smaller Clothes at the End of His Shows (and 8 More Revelations About His Costumes)
Michael Jackson was a picky dresser, and he wanted to stand out. That’s why his costumes had a lot of details that made everyone wonder why they were there and what they meant. For example, almost every jacket Michael Jackson wore had an armband on the right sleeve, and some of his jackets also had “777” sewn onto them.
We at Bright Side are fascinated with Michael Jackson`s wardrobe, and we`re ready to reveal some of the secrets behind his costumes!
1. Why he wore smaller costumes at the end of his shows
Michael Jackson`s dance routines were very physically strenuous, and he gave his all during his performances. By the end of the show, he would often lose up to 5 lbs, and his waist would become one inch thinner. And since it was important that his clothes fit perfectly, so that he could show off his dance moves, every next costume was a bit smaller than the previous one.
2. How his lean shoes worked
Michael Jackson`s shoes that helped him defy the laws of gravity had a V-shaped clasp at the bottom of the heels. With its help, he could hook into a nail attached to the floor and perform his famous 45-degree forward tilt. However, to be able to do that and to keep his whole body straight, an incredible amount of core and leg strength was also needed.
3. Why he only wore one glove
Michael had vitiligo, a skin condition where patches of your skin lose pigment. It started on his hand and he wanted to cover it up. And he thought it would look too ordinary to wear 2 gloves, so he would only wear one.
4. Why almost every jacket had an armband on the right sleeve
Michel Jackson just wanted his clothes to be different from everyone else’s. And having an armband on a sleeve makes your look distinguishable. Michael also liked to make his fans wonder why that armband was there.
5. Why there are 3 № 7s sewn onto his jackets
Michael was the 7th child in his family. Also, he was born in 1958, and if you add 19 plus 58, it equals 77.
6. Why he never polished his shoes
Once, the singer`s managers were concerned about the condition of his shoes and asked his costume designer to polish them. He did it, but it made Michael extremely angry. He explained that the leather was worn off exactly as he needed it to be, and that polishing would make it too slippery for him to perform his dance moves.
7. Why he wore white socks
Michael loved wearing white socks for several reasons. No one else wore white socks with black shoes. Moreover, they would catch the light and attract attention to the movements of his feet when he was dancing.
8. Why he taped his fingers
Hand movements were an important part of Michael Jackson`s dance routines. So he and his costume designers decided to wrap white tape around his fingers in order to attract more light. Michael also decided it would be more unusual to only tape his index, ring, and pinkie fingers. It was also fun for him, because fans would ask why only 3 of his fingers were taped.
When Michael danced, he would unconsciously put his 2 untaped fingers together. And that would also add mysteriousness to his performances, since the fans would think this sign had a secret meaning.
9. What the letters CTE on his jackets stand for
These letters don`t stand for anything. In the 90s, Michael`s costume designers created a few new shirts for him. He liked them, but he wanted to add some letters on the epaulets. He said it didn`t matter which ones, so his costume designers put all of the letters of the alphabet into a hat, and took 3 of them out at random. That`s where the letters “CTE” came from.
Do you think Michael Jackson had great taste in clothes? Is there any costume of his that you like in particular? We`d love to hear your thoughts in the comments!
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