Latest news with #albinism
The Sun
14-07-2025
- Science
- The Sun
‘Never-seen-before' creature found in Brit's garden for the first time & it looks like a famous striped sweet
A TINY animal that looks just like a mint humbug sweet has been spotted in Britain for the first time. The creature, a pygmy shrew, was discovered near St Austell, Cornwall, by Anita McMillan while she was out walking. 6 6 6 The pygmy shrew, which weighs no more than a penny at just 2.4 to 6.1 grams, is now considered the smallest land mammal in the UK. While pygmy shrews are widespread across the country with an estimated population of several million, one with these unique markings has never been seen here before. This particular shrew has a rare genetic mutation that causes white stripes or patches to appear in its fur – a condition known as partial albinism or leucism. Unusual markings There are an estimated 8,600,000 pygmy shrews in Great Britain, but this one is extremely unusual because of it's colouring. Normally, pygmy shrews have grey-brown fur on top and a grey underside, but this one had a distinctive striped look that resembled a traditional sweet. In Britain, albinism or leucism in shrews is very rare and usually only seen in the common shrew, not the pygmy variety. Anita, who is the sister of top British big cat tracker Rhoda Watkins, said: "I thought it was unusual with the markings. It seemed happy to play in the leaves in the open for so long. "As I was a distance away with the zoom lens, it wasn't aware of me and kept busy in the leaves. "It wasn't until I shared the picture with my sister that I realised it was very special. "She is into wildlife tracking and prompted me to contact the Cornwall Mammal Group for an identification." Experts comment Matt Larsen-Daw, CEO of the Mammal Society, said: 'As far as we know, this is the first pygmy shrew with this distinctive patterning ever recorded in the British Isles. 'Pygmy shrews are an important part of our ecosystems. They eat over 250 prey items in a single day – up to 125 per cent of their body weight.' The pygmy shrew may be small, but this rare striped example is making a big impression among wildlife experts. 6 6 6
CTV News
04-07-2025
- Entertainment
- CTV News
New N.S. comedy series pretty real, pretty funny and pretty blind
A new Nova Scotia comedy is breaking barriers and bringing big laughs. 'Pretty Blind' is inspired by true stories about living with low vision and albinism. 'It is, to the best of our knowledge, the first time someone with low vision has been the lead in a comedy series,' said co-creator Jonathan Torrens. 'It's the opportunity of a lifetime,' says the show's lead Jennie Bovard, who plays a fictional version of herself. 'I'm just going about my day and I'm encountering environments and people that mean well but maybe just sort of miss the mark.' 'Jenny Bovard is low vision and has albinism, but that is only one fraction of her character,' said Torrens. 'She's a marathon runner. She loves cycling. She's a craft beer enthusiast. One of the things that I loved about her instantly is she is so comfortable in her skin, and happy to educate.' Beyond the laughs, the show also aims to spark more understanding. 'People without a personal connection; I would love those people in the audience to take away some awareness, but never feel bad about not having known something ahead of time,' Bovard said. Production also came up with subtle moves to help low-vision audiences follow the story. 'You might realize that characters use each other's names more. 'Good morning, Katie! Hi Jonathan, how are you?' so that someone with low vision can go, 'Oh got it, I know who's talking now,'' said Torrens. Behind the scenes, the crew also had to adapt the typical television set to be more accessible. 'When you think about a TV set, there are bright lights everywhere. There's expensive gear all over the place,' said Bovard. 'So we really had to problem solve a lot of things and we did that successfully. I've never felt more heard and seen and understood in any other work environment in terms of access needs.' Adding to the East Coast vibe, the series features a soundtrack packed with local rock music. 'Pretty Blind' premieres Tuesday at 9 p.m. on AMI-tv and streams for free on AMI+.
News24
10-06-2025
- Entertainment
- News24
Refilwe Modiselle's children's book set to educate a generation
In her love letter to albinism, acclaimed model and entertainer Refilwe Modiselle introduces 'Zizi's World: Through Her Vanilla Eyes,' a children's book that blends personal experience with powerful storytelling. Zizi's World follows the story of Keyanna, a child with albinism going through a world of discovery and self-acceptance. Far more a fictional character, Keyana embodies Modiselle's own journey, experiences and triumphs: 'I want to tell a story about a girl with albinism. And I want to base that story on elements of my life. Because I think the most authentic story I can tell about a life of a child with albinism is the story of a young child, a child that lived with albinism, which is me.' Having workshopped the idea with her co-author Melissa, she notes how beautifully they worked together. She shares how the journey was never about egos but more so about collaboration and education. View this post on Instagram A post shared by Refilwe Vanillablaq Modiselle (@refilwemodiselle) READ MORE | Bontle Modiselle on acting, marriage and motherhood As someone with no previous experience writing a book, she talks us through her inspiration. Behind Keyanna's eyes Keyanna is more than a child living with albinism. She happens to be a model, and she happens to stand for something. 'The character is quite strong, the character is quite resilient, which is a beautiful message for anybody to have. But the character as well loves themselves. And loving yourself is something that you find sometimes, especially with children, you know, if you're seen as different, which is an ableism conversation, about disability, about physical disability, that it might be a bit difficult to navigate in different spaces,' she shares. The story follows Keyanna as a third person. 'She's the character that the parents can speak to the child about,' she notes, 'And I think for adults, it's a third-party character who's the focal point of a story. It's easier to introduce your child to understanding that. And that's what Kaya's book is. It's an educational but multilayered story of hope that helps the world begin to learn but also unlearn the ideologies that they have of what can be their normal, so to speak.' View this post on Instagram A post shared by Refilwe Vanillablaq Modiselle (@refilwemodiselle) Her family's influence in the book Growing up with albinism, Refilwe's family never made her feel different. Her sisters were her biggest fans and their bond, as seen in public, is still as strong as ever: 'My sisters had already been modeling and, when I wanted to join the industry, Bontle, specifically, would talk to a lot of these agents, and she would take my pictures to the agents. And they would say, no, there's no job for a person with albinism. And my sister would not take no for an answer. So, the significance of my family was that they fought for a lot of the rights that I have today, long before I was even aware of what my rights needed to be. They were a voice when I couldn't have one.' View this post on Instagram A post shared by Refilwe Vanillablaq Modiselle (@refilwemodiselle) SPF became the norm in their house. It was not about her being the only one using SPF, but everyone began using SPF. 'I think what was beautiful is I was never isolated in the things that I had to use. Everybody had to use it. So, SPF was not just for me. Everybody had to use it. So, there wasn't a separation of like, oh you use this, and then me. No, it was everybody in the house, everybody puts on SPF. And I think that was important, you know. And I think what is important is that my family was very involved in the intricacies of this condition that I have. Because the reality is, they're carriers, they have the gene. Genetically, they're carriers of the albinism gene, which means they can have a child with albinism. And so being carriers meant they got to equip themselves with a lot of knowledge, and they got to equip themselves with a lot of understanding of my life and what my life would entail.' More than anything, Refilwe hopes kids take one important lesson from the book: 'Hope. The simplest thing. Hope and courage to believe in the beauty of what they are, who they are. The simple thing I want them to take is the real truth that they are beautiful as they are. And at the same time, they are worthy of love and of being loved.' View this post on Instagram A post shared by Refilwe Vanillablaq Modiselle (@refilwemodiselle) Show Comments ()
News24
10-06-2025
- Entertainment
- News24
Refilwe Modiselle honours her father's legacy with children's book on albinism education
Growing up, she never saw herself represented in books or mainstream media. Her difference was misunderstood and hardly embraced. Being the pioneer that she is in the entertainment space, Refilwe Modiselle took it upon herself to challenge stereotypes and educate the world about albinism. Merging this with her love for children, Refilwe put pen to paper to lay the educational foundation at grassroots level. Though she had never imagined herself writing a children's book, it all felt perfect and just right when Lingua Franca Publishers presented her with the opportunity. 'It felt like a God-given assignment I couldn't say no to. When the idea was presented to me, it just made sense to pursue it. People have always asked when I'd write a book. I always thought that would come much later in life, maybe an autobiography in my very old age. But I guess destiny had other plans. Writing a children's book felt like the perfect way to ease me into authorship,' she laughs. Announcing it on social media, the media personality said adding the author title to her name was unbelievable and an unexpected dream. View this post on Instagram A post shared by Refilwe Vanillablaq Modiselle (@refilwemodiselle) Despite all her accomplishments over the years, the 39-year-old admits that her journey has been an easy one. In light of this big accomplishment with the 28th of June being the official release day for the book, Refilwe emotionally pens down a message to her younger self. 'You were born a light in this world, and God knew exactly what He was doing when He created you. You didn't know how big your light would become but you kept shining anyway! Well done, kiddo, for holding on to your light even when the world tried to dim it. They tried to bury you, but they didn't know you were a seed!' Read more | Lloyiso's weight loss journey shapes new music chapter Refilwe lets Drum into the making of the book – Zizi's World: Through her Vanilla Eyes. 'I was under the pressure to deliver within a specific time frame, so I had to start writing whether I liked it or not (laughs). I went back and forth not knowing where to even begin with the kind of story I was going to tell. But then divine inspiration struck: to draw from my own life and experiences (with a bit of fiction of course), and to craft a story that touches on narratives we rarely explore.' Drawing inspiration from her own journey, she tells the story with beautiful illustrations that have emotional resonance with children aged 4–12. 'The story is centred around Zizi, a bright, confident girl with albinism, and thanks to her loving parents, she has always felt proud of who she is. When her family moves to the big city and Zizi starts primary school, she notices that there are so many different people in the world, and very few, if any, look like her. For the first time, she feels unsure of herself after some of her classmates are unkind. With her parents' support, Zizi learns to embrace and find strength in her uniqueness. The book not only reflects a journey of living with albinism, but also of discovering the beauty of standing out in a world that often doesn't know how to accept differences. Children deserve stories where they are seen, affirmed, and celebrated – Zizi's World: Through Her Vanilla Eyes is precisely that,' she elaborates to Drum. More than just the overall experience and education around albinism itself, Refilwe wants kids with a 'difference' in any way, shape or form to know that they too have a place in the world. 'I'd love children to affirm each other & be groomed early in the principle of respecting each other. There are so many layers to this book, so kids will take away multiple themes & lessons, such as self-love, the importance of family, friendship, embracing differences, anti-bullying, and discovering your own superpower. Most importantly, I want kids to know the world is limitless if you believe in yourself. The world is your oyster!' Read more | KwaMashu-born runner, Nate Ngcobo, beats paralysis odds in Comrades Marathon If any parent is doubting making the purchase of Zizi's world for their children, they are assured of the positive mindset, invaluable education that the book sparks not only for the children but the parents as well. 'This book offers a unique and rarely explored narrative that will provide children with an invaluable education, positively shaping their mindset. It's more than just a story for the kids; it's an opportunity for parents to engage in a different kind of story time. While it's bought for the children, parents will also find themselves reflecting on various themes that may spark positive personal insights and growth. It's a book for children, but surprisingly, it's for parents too.' Acknowledging the influence of literature her late father had on her and her sisters, she says she knows he'd proud of her for empowering the world through literature. 'My dad was a strong academic and an advocate for reading. He was part of spaces like The Reader's Digest Book Club, so I know he would be incredibly proud. He would have reminded me how reading empowers people and I'm now doing the same through this book. It's a beautiful way to honour his legacy, especially in an era where digital content has pulled many kids away from the joy of reading. He would tell me he is proud I'm helping shape young minds to become better human beings.'
Daily Mail
08-06-2025
- Daily Mail
The six-year-old albino boy whose hand was hacked off by his FATHER to make potions for witchdoctors in Tanzania
A band of armed men storm into the house of a six-year-old boy in the dead of night. They knock his terrified mother unconscious before bursting into the child's bedroom, hauling him from his cot and pinning him to the ground. Then one member of the group - the boy's own father - steps forward with a machete and mercilessly swings it down to sever the boy's hand. They gleefully make off with the body part, leaving the child screaming and bleeding in his empty bedroom. No, this is not the plot of a Stephen King novel or a skin-crawling horror film. This is the lived experience of Baraka Cosmas Lusambo, one of hundreds of people with albinism (PWAs) across Central and East Africa who became unwilling organ donors at the hands of people who believe their body parts can cure afflictions or bring good fortune. Albinos - sometimes referred to as 'the invisibles' - have historically suffered appalling treatment in parts of the African continent. Not long ago, albino babies were routinely killed at birth, thought by their parents to be bad omens or curses. Today, infanticide has largely declined, but many PWAs are born with a price tag on their head. Even people born without albinism but with particularly fair skin and eyes risk a similar fate. Last week, the guilty verdict handed down last week to a South African woman who sold her bright-eyed daughter to a witch doctor in February 2024 renewed focus on the dark trade of human trafficking and the targeting of young children for profit. But PWAs like Baraka are ever more susceptible to the deplorable practice. There are countless horror stories across East and Central African nations of albino children and adults alike being butchered - sometimes by their own relatives - and their remains used in macabre concoctions. Bones are ground down and buried in the earth by miners, who believe they will be transformed into diamonds. The genitals are made into treatments to bolster sexual potency, and their hair is woven into fishermen's nets. Nowhere are these practices more rife than Tanzania, where roughly one in 1,400 people are born with albinism - the highest incidence of the condition anywhere in the world. In Baraka's case, his injuries came about after a 17-person-strong gang led by his father, Cosmas Lusambo, and his uncle stormed into his house and hacked off his hand with a machete. His lower leg was also badly injured in the attack but doctors were able to save it. The group reportedly sold the child's bloodied and battered body part on the open market for $5,000 - a huge sum in a country where the average wage in 2016 was the equivalent of $157 per month. Though Baraka will contend with the trauma for the rest of his life, reports about his vile ordeal caught the eye of the Global Medical Relief Fund, a charity started by Staten Island woman Elissa Montanti in 1997 to help young people from crisis zones get custom prostheses. Baraka was one of five Tanzanian children treated in the US for their injuries sustained when they were attacked for their body parts Montanti reached out to Under the Same Sun, a Canada-based group that advocates for and protects people with albinism in Tanzania that sheltered Baraka following the attack in March 2015. When Montanti asked if she could help him, the group said four more children who had been attacked for their organs were in need of care, and pleaded with the charity founder to consider providing new limbs for them as well. Montanti agreed and brought all five to live for the summer at her charity's home on Staten Island, while they underwent the process of getting fitted for and learning to use prostheses about two hours away at Philadelphia Shriners Hospital for Children. The cohort of kids spent five months of 2015 from June to October living with Montanti while undergoing prostheses fitting and rehabilitation at the hospital in Philadelphia. Between trips to the hospital, Montanti filled their summer with trips to various American landmarks, swimming pools, and the beach - activities that could have proven lethal in their native Tanzania. Montanti said at the time the children had become like her adopted kids, and that she had grown especially close to Baraka. 'They're not getting their arms back,' she said. 'But they are getting something that is going to help them lead a productive life and be part of society and not be looked upon as a freak or that they are less than whole.' The group of five children, including Baraka, returned to Tanzania in October 2015 and were looked after in secure sheltered accommodation in the city of Dar es Salaam. But they made frequent trips to and from Staten Island for new prostheses to accommodate their growing bodies. Baraka is now 16 years old. Montanti told MailOnline that he and his friends will return to Staten Island once again in August this year. Albinism is a condition caused by a genetic mutation that strips the skin, hair and eyes of pigment created by melanin, a substance that also acts as a shield against the sun's harmful ultraviolet light. The lack of protective melanin comes with heightened risks of skin cancer and vision loss for those exposed to the sun. Those born with it can generally live long, healthy lives provided they are appropriately looked after as children and have the provisions to protect themselves as adults. Unfortunately, this is not often the case in large parts of Africa. More than 90% of people with albinism on the continent, where roughly one out of every 5,000 people is born with the condition, die before they reach the age of 40 due to health complications brought on by sun exposure. In rural areas, PWAs are sometimes banned from working or going to school and are isolated by their communities - a move that makes them all the more vulnerable to bounty hunters, traffickers, witch doctors and impoverished citizens with nowhere else to turn. One of the most dangerous myths is that having sex with an albino can cure HIV. That belief has driven an epidemic of sexual violence against albino women, many of whom contract the virus as a result. PWAs are hunted, murdered, and dismembered. Children are kidnapped from their families, or in some cases sold off by willing parents desperate for money. Even in death, they are not safe. Grave robbers are known to desecrate the graves of PWAs to steal their bones. As attacks on PWAs became more widely reported after the turn of the century, governments and judiciaries have taken some steps to reduce the violence. In 2009, a Tanzanian court handed out death sentences to three men who were convicted of abducting and butchering 14-year-old albino boy Matatizo Dunia - the first time capital punishment was handed out for such a crime. The attackers broke into Dunia's home and dragged him out of his bed before hacking him to pieces. One was reportedly found holding his severed leg while the boy's dismembered corpse was discovered dumped in scrubland. But there are thought to be dozens if not hundreds of cases of attacks on PWAs that go uninvestigated or unreported altogether, and critics say many governments - including that of Tanzania - are doing little to change the violent trend. In February, the African Court on Human and Peoples' Rights (ACHPR) delivered a landmark judgment against the Tanzanian government after civil rights groups successfully argued officials were committing human rights violations by failing to prosecute attacks against PWAs. The ruling decreed that the government must launch a years-long public awareness campaign, criminalise attacks against PWAs and increase healthcare provisions for albinos those with skin and eye problems. It came after the UN last year condemned Tanzanian authorities for their failure to condemn and investigate attacks against PWAs after examining multiple cases of mutilation which were either not investigated, or had prosecutions withdrawn. It remains to be seen whether the ACHPR's ruling will have any effect on the Tanzanian government's policies, given that there is no official method to enforce the court's decisions. Tanzania is just one of several nations where violence against PWAs is rife. The past two decades have seen dozens of cases of PWA mutilations and killings in neighbouring Kenya, Malawi and the Democratic Republic of the Congo (DRC), among others.
