Latest news with #albinism
BBC News
5 days ago
- Health
- BBC News
Family 'over the moon' with Southampton albinism research funding
The mother of a two-year-old girl with albinism has welcomed funding for research into improving eyesight for children with the daughter Amelia is severely visually impaired as a result of albinism.A research project at the University of Southampton will use over half a million pounds of funding to look at whether Levodopa, a drug commonly used to treat Parkinson's Disease, could improve the eyesight for children like her."As a family we are over the moon that the research has been given the go ahead," said Amelia's mother, Abby. "It's really exciting to imagine how many children could benefit in the years to come." Albinism affects between one in 12,000 and one in 15,000 people in European countries, and affects the production of melanin - pigment which colours eyes, skin and condition is associated with a deficiency of a chemical called L-DOPA, which is essential for the normal development of a result, babies with albinism can have severe sight problems as they grow years, Dr Helena Lee has looked at whether replacing L-DOPA could improve eye research project, called OLIVIA, has been granted £542,000 from the Medical Research Council to investigate whether Levodopa could hold the key if given to children below the age of two."We believe we've found a treatment which will help [children with albinism], and this award means we can start testing this in the real world," said Dr Lee. Abbey and another parent, Joe, whose daughter also has albinism, have already raised over £43,000 to help support the whose two-year-old daughter Raya wears glasses for short-sightedness to protect her eyes, completed seven marathons in seven cities in seven days in aid of the University charity, Gift of Sight."News of this new funding to allow trials to go ahead is fantastic," he university said the OLIVIA study, which is set to begin as a small-scale trial with about 10 children, could also pave the way for identifying new therapies for other childhood eye conditions. You can follow BBC Hampshire & Isle of Wight on Facebook, X (Twitter), or Instagram.
The Sun
09-08-2025
- Health
- The Sun
I was accused of cheating after my baby was born with a different skin colour – there's a perfectly reasonable reason
A MUM has revealed how strangers accused her of cheating on her husband after her daughter was born with a different skin colour to the rest of the family. Belvana Abeli's, daughter, Zayana Domingos, two, was born with albinism and has light skin, hair and eyes, while her parents and two other siblings are black. 5 5 The 36-year-old explained how her daughter is regularly discriminated against for looking different, with strangers asking if she is adopted and have even accused Belvana of cheating on her husband due to how their daughter looks. Belvana, from Cape Town, South Africa, said: 'The reaction to her having albinism was really well within our family but externally, there were a lot of questions. 'People have questioned whether I cheated on my husband with a white person – it's a lot to deal with. 'People will ask things about why my one daughter is black and the other is white or ask if she's adopted. 'It's offensive, but people unconsciously do it.' After suffering with Covid-19 during her pregnancy, the mum had to have an emergency C-section at just 28 weeks. When she saw her newborn baby for the first time, Belvana was left questioning why her baby had a different skin colour and ginger hair. However, after genetic testing, doctors confirmed Zayana had been born with albinism, a life-long condition. Initially, the mum-of-three was unsure whether there was any family history of the condition and later learned that her grandmother's great-uncle had albinism and also suffered from discrimination. 'Giving birth to an albino baby was a surprise as albinism was not known to run in any of our families,' she says. 'Doctors initially said her skin and hair would darken with time, but after a few days in hospital, we were informed that she had albinism. 'As time went by her skin and eyes got lighter and lighter. We already had a black daughter and weren't expecting an albino baby at all.' Zayana has two siblings, one older sister and one younger brother who are both black. Zivah Domingos, five, is the eldest of the trio whilst Zander Domingos, five months, is the youngest. People with albinism will often suffer from a lack of vision due to the reduced amount of melanin in the layer of cells in the eye as well as having a higher risk of sunburn and skin cancer. After falling pregnant with her third baby, Belvana was curious as to what colour skin her next child would have after having an albino baby. She consulted the doctor to see if there were any tests that could be done to determine the possible albinism. Although she didn't mind, Belvana wanted to minimise any possible shock. Speaking about her 'miracle' albino baby, Belvana adds: 'Having an albino child has been challenging at times due to the lack of education about albinism, for example, being told that our daughter needs a special school because albinism is a disability. 5 5 'But it has also been a great blessing to us because it has given us the opportunity to share our story and increase knowledge about albinism.' Her eldest daughter, Zivah, has started to ask questions about why her little sister looks different to the rest of the family. She added that Zayana is too young to question her looks, but her mum knows that the questions will be asked when she gets older. WHAT IS ALBINISM? Albinism is an inherited genetic condition where people are born without any kind of pigment in their body. Their body is unable to produce melanin (which gives you colour), and can affect the skin, eyes and hair. This causes those who are born an albino to have very pale skin, eyes and hair, and the condition can affect all races. There are two main kinds of albinism, which are oculocutaneous albinism and ocular albinism. Albinism affects around one person in every 20,000. 'When I was pregnant with my son, my daughter was asking me if he was going to be white or black,' she says. 'My eldest is coming to a point where she's starting to understand that Zayana is different to others in the family. 'But, she is our miracle baby, and we are super fortunate to have her in our lives.' 5
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 ()
