Latest news with #XerodermaPigmentosum
Daily Mail
3 days ago
- Health
- Daily Mail
I have a rare skin disease that means I can never go outside - people thought I was 'irresponsible' having a baby but here's what it's really like for me to have a family
A woman with a rare skin condition has hit back at trolls who branded her 'irresponsible' for having a baby. Karine de Souza, from Brazil, suffers from Xeroderma Pigmentosum (XP), which makes her skin extremely sensitive to sunlight and means she risks getting melanoma every time she steps outside. The 34-year-old always dreamed of starting a family with her husband, Edmilson, and the pair welcomed a baby girl, Zaya, in January 2023. Despite her health battles, Karine said her pregnancy was 'really smooth' and that Zaya has a less than one per cent chance of developing the same disease as her mum. She said she has copped judgement and 'numerous negative remarks' online from people claiming she was 'irresponsible' for having a child and that her daughter will be 'scared' of her mother because of her appearance. 'I don't think it was irresponsible of me to have children. Having children and building a family was a dream that we had,' Karine told YouTube channel Truly in a video. 'I believe every dream is valid despite the difficulties and struggles or situation you find yourself in.' However, Karine said she has learnt to 'ignore' and 'brush off' the cruel comments and that she receives lots of support from fans online who have deemed her an 'inspiration'. XP is a rare, incurable condition where the body struggles to repair damage from UX exposure - causing severe sunburns, freckling, dry skin, and an increased risk of skin and eye cancers. As a result, Karine has to slather herself in SPF100 sun cream every two hours. Karine has had 219 surgical procedures to remove lesions caused by the sun, including the removal of her lower lip and part of her nose. She cannot see out of her left eye and is using drops to treat an issue in her right eye and restore its vision. Just before, the mum found out she was pregnant, doctors found two nodes growing on her lungs which were later discovered to have metastasised. Surgery on the masses was delayed due to some painful skin lesions on Karine's back which needed to be treated first. 'At this point, I didn't know I was pregnant though I actually was pregnant,' she recalled. 'Today I am so thankful for God, if it weren't for the back lesions appearing, I would have undergone surgery and lost my child.' Despite her condition being genetic, doctors told her Zaya would have a very small chance of being affected by XP herself. WHAT IS XERODERMA PIGMENTOSUM? Xeroderma pigmentosum (XP) is an inherited condition that causes extreme sensitivity to UV rays. It has been described as a 'one-in-a-million' condition and is brought on by a genetic mutation. Sufferers require complete protection from the sun, including clothing, sun cream and dark sunglasses. Eighty-to-90 per cent of sufferers also experience: Joint pain Cognitive problems Teeth abnormalities Due to sufferers being at high risk of sunburn, skin cancer is extremely common among patients. There is no cure for XP. Management of the condition includes protection from UV light, frequent skin examinations and prompt removal of any cancerous tissue. Source: National Center for Advancing Translational Sciences 'It does not affect her in any physical way. She is not affected by me being her mother as I always do my best in everything I do,' Karine said. 'According to doctors, the chances of my child having the same condition is under one per cent. 'The only possibility of my child having the same condition as me is if my husband has the same condition as me or if he was related to me.' Even though Karine was able to give birth to a healthy baby and Zaya is thriving, she endures awful comments from people on social media. 'People say that children will be scared of me and be afraid because of my condition and my face and so many other aspects,' she said. 'The negative things people tend to say are "how irresponsible", that I wasn't meant to have any children, that my child will be scared of her mother and that I wasn't meant to exist in this world.' Karine said when she's out in public, people stare and leer at her but she doesn't let it get her down. 'There are always those who stare at us. Sometimes it's out of curiosity, sometimes it's just plain discrimination but I don't let it affect me. I simply just brush it off,' she said. 'Nowadays I just brush it off, I've realised the issue isn't with me but other people's problems. The judgement is a reflection on themselves, not me.' She wants her trolls to try to put themselves in someone else's shoes before making mean comments. 'They should try to know the whole story properly, the facts behind the case and for people to live their lives. Instead of judging and criticising, they should try to be happy, just as I am happy,' she said. The mum-of-one doesn't just receive hate - she also has a loyal social media following of support. 'The positive comments about the birth are simply marvellous. I have a lot of people that follow me on social media. I've had a lot of encouraging messages with people saying I'm an inspiration,' she said. 'I feel like the happiest woman in the world to be Zaya's mother. I say to people that everyone has the right to fulfil their dreams, be happy and build something. 'This was something that I so yearned, wanted and dreamt of regardless of the can't let adversity get the better of you, you do have to try.' Edmilson said he did worry about Zaya contracting XP, even though the chances were so slim. 'When you know you're about to be a father, you tend to worry about the smallest chances. Even with such low chances I was still worried. Now, I worry about less serious things, like how to hold her,' he said. 'I also worry about Karine's health, so much so that we really keep exposure to the sun to a minimum. Whenever we go out she wears a lot of sun cream. I do what I can for prevention. I feel so lucky that Zaya has a mother like Karine. Zaya is lucky to have a mother who is determined, strong, and a fighter like Karine.' Karine and Edmilson met on social media in 2017. He previously told Truly, that he 'fell in love with her story' and her 'strength'. Soon after they started dating, the couple posted photos of them together online, and this led to comments questioning the legitimacy of their relationship. Karine explained: 'We have already read many offensive comments calling me a monster, deformed, a zombie.' Others suggested she was Edmilson's 'sugar mommy' and that she must be rich. Despite any setbacks, Karine is 'very happy' and enjoys life. She wants others to realise the importance of being positive. 'Be happy, smile, because life happens only once,' she said.
Morocco World
24-02-2025
- Business
- Morocco World
UAE Prime Minister Names Morocco's Ahmed Zainoun Arab Hope Maker
Rabat – The Prime Minister of the United Arab Emirates, Sheikh Mohammed bin Rashid Al Maktoum, has named Moroccan Ahmed Zainoun the top Arab Hope Maker. Zainoun was crowned during a grand ceremony on Sunday at the fifth edition of the Hope Makers initiative in Dubai. He also received a prize money of AED1 million ($272,000), according to the Emirates News Agency. The award honors people who make a positive difference in people's lives. Zainoun received the highest number of votes during the closing ceremony for his foundation 'Moon Voice,' that helps children with the genetic disorder Xeroderma Pigmentosum, commonly referred to as 'Children of the Moon.' Zainoun took to his social media to celebrate the recognition, saying that it is the culmination of years of 'work, effort, and struggle to create hope for children who have lost hope in life.' The other two finalists, Samar Nadeem from Egypt and Khadija Al-Qorti from Morocco, also received a prize money of AED1 million each. Speaking at the award ceremony, Al Maktoum described hope makers as 'inspiring role models' who transform lives without seeking recognition. 'Hope Makers embody the true meaning of selfless giving, working tirelessly behind the scenes … leaving an enduring legacy of humanitarianism,' the ruler of Dubai added, as reported by local media He added that the Arab world is 'rich' in such examples of hope makers that display 'kindness and service,' noting the importance of recognizing their efforts and encouraging such initiatives. The fifth edition of the Hope Makers initiative received over 26,000 entries within only a month, bringing the number of participants throughout all editions to 320,000. 'Since its inception in 2017, Hope Makers has become a landmark initiative in the Arab world's humanitarian landscape. It inspires positive competition, motivating individuals to serve their communities and develop innovative projects that address the needs of thousands,' said Mohammad bin Abdullah Al Gergawi, Minister of Cabinet Affairs. Tags: hope makermoon childrenMoroccoUAE
Emirates 24/7
24-02-2025
- Health
- Emirates 24/7
Mohammed bin Rashid crowns Ahmed Zainoun of Morocco as leading Arab Hope Maker
His Highness Sheikh Mohammed bin Rashid Al Maktoum, Vice President, Prime Minister and Ruler of Dubai, in the presence of H.H> Sheikh Maktoum bin Mohammed bin Rashid Al Maktoum, First Deputy Ruler of Dubai, Deputy Prime Minister and Minister of Finance, crowned Ahmed Zainoun from Morocco as the top Arab Hope Maker. Zainoun received a prize of AED1 million. H.H. Sheikh Mohammed also directed that the two other finalists, Samar Nadeem from Egypt and Khadija Al-Qorti from Morocco, also be honoured with equivalent cash prizes of AED1 million, thus raising the total value of prizes presented with the Hope Makers awards to AED3 million. Zainoun earned the top honours after receiving the highest number of votes during the closing ceremony of the 5th edition of the Hope Makers initiative, the largest of its kind in the Arab region dedicated to honouring people who make a difference to the lives of others. Zainoun was recognised for his initiative to treat children with the disorder called Xeroderma Pigmentosum. Young patients suffering from the condition are also referred to as 'Children of the Moon.' The closing ceremony of the initiative was held at the Coca Cola Arena today and its broadcasts watched by tens of millions across the Arab world. H.H. Sheikh Mohammed bin Rashid Al Maktoum said, 'Hope Makers embody the true meaning of selfless giving, working tirelessly behind the scenes. They are inspiring role models, transforming lives without seeking recognition, leaving an enduring legacy of humanitarianism. The Arab world is rich in such examples of kindness and service. Recognising these initiatives is an acknowledgment of the values of generosity and compassion.' Congratulating the winners and all participants, H.H. Sheikh Mohammed added, 'Thousands of inspiring individuals across the Arab world joined this fifth edition of Arab Hope Makers. These philanthropists embody generosity and a commitment to positive change, serving as beacons of hope for a brighter future. The UAE remains dedicated to supporting hope and inspiring initiatives, serving as a champion of optimism in the Arab world.' The closing ceremony was attended by H.H. Sheikh Ahmed bin Saeed Al Maktoum, President of the Dubai Civil Aviation Authority, Chairman of Dubai Airports, and Chairman and Chief Executive of Emirates Airline and Group; H.H. Sheikh Mansoor bin Mohammed bin Rashid Al Maktoum, Chairman of the Dubai Sports Council; and H.H. Sheikha Latifa bint Mohammed bin Rashid Al Maktoum, Chairperson of the Dubai Culture and Arts Authority (Dubai Culture). The fifth edition of the Hope Makers initiative received over 26,000 nominations within a span of just one month. Each nomination was carefully reviewed according to the initiative's criteria. Over the past five editions, the initiative has engaged more than 320,000 participants. Mohammad bin Abdullah Al Gergawi, Minister of Cabinet Affairs, and Secretary-General of the Mohammed bin Rashid Al Maktoum Global Initiatives (MBRGI), stated that the Hope Makers initiative reflects the vision of H.H. Sheikh Mohammed bin Rashid Al Maktoum of fostering a culture of giving and encouraging humanitarians and volunteers to develop impactful projects that drive positive change and counter negativity across Arab communities. Al Gergawi added, 'Since its inception in 2017, Hope Makers has become a landmark initiative in the Arab world's humanitarian landscape. It inspires positive competition, motivating individuals to serve their communities and develop innovative projects that address the needs of thousands, empowering them to rebuild their lives with hope and confidence in the future.' Al Gergawi noted that receiving over 26,000 nominations in a single month for the fifth edition, with the vast majority of participants presenting innovative charitable projects, demonstrates the Arab world's rich humanitarian spirit and its people's capacity to create a brighter future. Hosted by Neshan Der Haroutiounian and Asmahan Al Naqbi, the fifth edition's closing ceremony featured several performances, including a musical operetta by Hammoud Al-Khader, Walid Al-Shami, Balqees, and Omar Al-Abdallat, which preceded the announcement of the Arab world's top Hope Maker. Internationally renowned singer and music producer RedOne also performed at the ceremony. At Dubai's Coca-Cola Arena, attendees watched videos showcasing the journeys of the three finalists, highlighting their humanitarian work and the impact they made in the lives of those in need, including orphans, the sick, the elderly, and the homeless. The audience also heard inspiring stories from two Hope Makers from Tunisia and Mauritania. Samar Nadeem, founder of the 'Zahrat Masr' shelter, dedicated her life to helping others. Raised with a strong sense of compassion, she began her journey in 2016 by assisting an elderly woman living in her building, helping facilitate for her basic necessities that she lacked. After sharing the woman's plight on Facebook and receiving an outpouring of support, Samar began receiving numerous requests for help from the public. She responded by aiding the homeless and placing them in shelters. In 2017, Samar founded 'Zahrat Masr' to provide safe housing for elderly homeless individuals, and today, the shelter houses dozens of people from across Egypt. Ahmed Zainoun leads the 'Moon Voice' association, which supports children with Xeroderma Pigmentosum (XP). Also known as 'Children of the Moon,' young people with this rare genetic disorder are extremely sensitive to ultraviolet light, raising their risk of skin cancer. Since there is no cure, protection through special creams and UV-protective clothing is crucial. Zainoun cares for 144 children with XP, raising funds to provide them with necessary medications and protective gear. Despite his efforts, some children have succumbed to the disease, motivating him to seek further support for Moon Voice to enable these children to live fulfilling lives and continue their education. Zainoun remains dedicated to his mission, hoping for greater community support to instill hope in young patients and to help them adapt to their condition and lead enriching lives. Khadija al-Qorti has become a symbol of hope for cancer patients in Morocco, particularly women. Known affectionately as the 'Mother of Morocco's Patients,' her journey began after losing both her husband and sister to cancer. Turning personal tragedy into a mission for compassionate action, she opened the doors to her home in Rabat, providing free shelter, food, medicine, and emotional support to women battling the disease. With the help of donors, she later expanded her efforts by establishing the Jannat Association, a larger facility to continue her charitable work. Despite limited resources, Khadija has welcomed over 10,000 women from across Morocco since 2009, offering them a place to stay and daily meals for up to three weeks while they seek treatment. Tunisian Hope Maker Karim Arfa builds and repairs bridges in his area using recycled materials. Inspired by the tragic drowning of a schoolgirl in 2019, he has proudly constructed over ten bridges around the town of El Mourouj to ensure safe passage over rivers and streams for locals. He also runs a small public works company and recycles old furniture to donate to those in need. Mauritanian rapper Racine Dia, abandoned as a baby and raised by a loving family, now dedicates his life to rescuing orphaned and abandoned children. Inspired by his personal experience, he provides care, shelter, and a sense of belonging to dozens of children. To further his work, he founded the 'Association for the Fight Against Child Abandonment,' which, with the help of volunteers, provides a supportive environment for these children to thrive and integrate into society. The Hope Makers initiative, operating under the Mohammed Bin Rashid Al Maktoum Global Initiatives, aims to highlight these unsung heroes – the men and women dedicating their time, effort, and resources to serving others, aiding those in need, and improving lives. It seeks to amplify their stories and projects through traditional and digital media, increasing their recognition within their communities and across the Arab world. By showcasing these positive role models, particularly among youth, the initiative aims to inspire others towards constructive change and community development, celebrating them as true stars deserving of praise and recognition. Follow Emirates 24|7 on Google News.
