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#15
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02-19-2009, 02:58 PM
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 My Rank: PRIVATE Poster Rank:5705 Join Date: Feb 2009 Posts: 42 Mentioned: 0 Post(s) Quoted: 0 Post(s)
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Re: Harlequin Ichthyosis (video)
The oldest survior is Nusrit "Nelly" Shaheen from England(  ) Heres an articale on her dated May 9 2008  Every morning Nusrit Shaheen, known as Nelly to her friends, enjoys a long soak in the bath. She will also usually have one before she goes to bed at night. Nothing unusual. Many people chose to relax in this way. But for Nelly her daily routine is not done to help her unwind, it is a medical necessity. The baths are just two steps in a rigorous regime of sloughing off skin and being covered in liquid paraffin that she has to endure in order to cope with the rare skin condition harlequin icthyosis. It is so rare that at just 24, Nelly is the oldest survivor with the life-threatening disease in the UK. Most sufferers die when they are babies. It means that her skin grows 10 times faster than normal and has to be rubbed off. The names comes from the diamond-shaped scales that are characteristics of infants born with it. Like human armour plating, its stiffness can restrict respiration while the cracks in it mean that sufferers are also very susceptible to infections. "I did get a bad one when I was younger and I still get them from time to time but not as many as I used to," Nelly explains. "I try and prevent them as much as possible by keeping myself fit." Nelly is determined not to be metaphorically wrapped in cotton wool because of her illness and admits that sometimes she is as bad as any other 20 something about looking after her health. "I don't have a special diet but I probably should eat more fruit and vegetables and fewer kebabs," she says, grinning cheekily. "Maybe take some vitamins and stuff," Nelly has four sibling who were also born with the same condition and who died as small children. She has two other brothers and two sisters who escaped the mutated gene that causes it. "It was hard on my parents," she admits, her characteristic bubbliness suddenly dimming for a moment. As she grew up she was determined to be like any other youngster and join in with sibling rough and tumble. "I did have to be careful and if I did get a few knocks they had to be bandaged to make sure they didn't get infected." She was self-conscious about her appearance though and used to hide beneath baggy clothes and a coat. Now though she favours pretty tops, sparkly T-shirts and electric blue nail varnish. She has also got accustomed to the stares of strangers, particularly outside the non-judg-mental walls of Hereward College in Coventry where she is a student. "People do make comments," she says. "It is harder out of college. I don't let them to get the better of me, unless they actually come up and ask me questions which I don't mind answering." Three years ago a television production company made a documentary about two pairs of sisters, Lucy and Hannah Betts and Dana and Lara Bowen, who all havethe condition. At the time it was thought that Lucy, who was in her late teens, was the oldest person in the UK. However, Nelly and Lynne Hartopp, the carer in charge of her daily routine of baths, creaming (repeated several times a day to keep her skin from stiffening and her joints flexible) and eye drops (scales can grow on the inside of the eyelids and Nelly needs liquid to prevent her eyes from getting dry) believe that Nelly didn't figure on the researchers' radar because she is coping so well with it that she hadn't kept up with consultants appointments. In fact these days there is no holding her back. She is taking part in the Walk For Skin in Sutton Park next week to try and increase awareness not just of harlequin icthyosis but many skin diseases, including eczema, vitiligo, psoriasis, scleroderma and skin cancer. She is happy to become something of a figurehead for coping with these kinds of conditions and has even been interviewed by Phil and Fern on daytime television. "It is the first time I have done the walk, I will be doing it with Lynne and one of my friends to raise awareness for the British Skin Foundation because as a charity it seems a little under-supported," says Nelly. The four mile step out will quite literally be a walk in the park for Nelly, who is passionate about sports. She has tried her hand at all sorts: canoeing climbing, javelin, running and diving. She is studying sports coaching and leadership at Hereward College and hopes to teach it. It is since coming to Hereward, a residential and day college that caters to students with disabilities and learning difficulties, that Nelly has blossomed. Lynne says, "When the documentary first come out I said to Nelly that she was the oldest person with this condition and that she should be recognised for that. We talked to a newspaper about doing an article but Nelly was so nervous and lacking in confidence that we didn't take it any further but gradually it became apparent that she did want to highlight the condition and her perception of it. Now there is no stopping her." It was Lynne that gave her unique nickname the first time they met when Lynne took over her creaming regime. "We were chatting because I hadn't come across the condition before. She was putting on her clothes and I didn't pull the tights up properly so they were all wrinkled, so I said she looked like Nelly Nora Batty." Because it is so rare for someone with harlequin ichthyosis to live beyond childhood Nelly admits that no-one has said what her prognosis is. "Nobody has really said anything," says Nelly. "My respiration is fine and as long as a I look after myself and keep doing what I do I should stay healthy." |
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#20
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07-14-2009, 10:20 AM
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 My Rank: LANCE CORPORAL Poster Rank:2668 Join Date: Jan 2009 Posts: 156 Mentioned: 0 Post(s) Quoted: 10 Post(s)
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Re: Harlequin Ichthyosis (video)
Yes i saw the same vid gory girl... it made me feel terrible..for him... he can't do anything... thats how its been for his whole life..... also the bandages he has to go thru are absolutley insane, like someone else said, human euthanasia .... have them suffer for at most 10-20 years or do them a favor at birth |
