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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
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

Daily Mail​

time3 hours 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.

Isle of Man's veteran's hand crank challenge to 'inspire others'
Isle of Man's veteran's hand crank challenge to 'inspire others'

BBC News

time4 hours ago

  • Health
  • BBC News

Isle of Man's veteran's hand crank challenge to 'inspire others'

An army veteran who completed the equivalent distance of the Isle of Man's Parish Walk on a hand crank machine after losing the use of his legs said he hoped his efforts would "inspire others".Mike Ryan said he decided to complete the 85-mile (137km) challenge at the National Sports Centre (NSC) as the event's route would be "impossible" in a wheelchair due to the said he had decided to take on the venture, which he completed in just over six hours, to "surprise" himself and demonstrate to others "I am more than what you see".Mr Ryan said: "It is easy for people to look at people with a disability and think they are 50% of the next person... give me an option to be judged on a level playing field and I won't come last." The former member of the Royal Engineers said he decided to use the hand crank machine, which is designed to improve upper body fitness, because it was the only piece of exercise equipment he could use that registered a distance. Mr Ryan, who served in the British Army between 1994 and 2001 and did tours of Germany, Bosnia and Northern Ireland, said he broke his legs in more than 140 places over a three year was referred to the NSC by the island's mental health services due to developing post-traumatic stress disorder (PTSD) after leaving military service. Attending the gym sessions "helps me get out of the house more and combat stress", he said he had "jokingly" asked to sign up for the Parish Walk Challenge at the NSC, which sees entrants complete the distance of the walk on a variety of gym equipment, but had then taken it on in receiving a medal for completing the task, he said although it was different from the annual walk itself it was no less of an achievement."I know it is not the same as completing the Parish Walk, but I would say to anyone to go and do 85 miles in a day is challenging, even if it is not the same challenge," he others with PTSD to seek help, he said: "Don't suffer in silence like I did for a few years."Completing the challenge in six hours and 15 minutes, Mr Ryan raised about £650 for local charity Bridge the Gap, which aims to help young people with long-term health conditions. Read more stories from the Isle of Man on the BBC, watch BBC North West Tonight on BBC iPlayer and follow BBC Isle of Man on Facebook and X.

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