– If you think neurofibromatosis recklinghausen is difficult to pronounce – so try to live with it.
How to wont Lotte Josefsen to say about his illness, which, ironically, has an extremely cumbersome name, despite the fact that one of the symptoms of it can be learning disabilities and language problems.
ever since, the 35-year-old Lotte Josefsen from Esbjerg recently became a member of the Facebook group ’the Faces of Neurofibromatosis’, she thought, that she would like to tell his story.
And when she recently clicked on an article about american Libby, who told of his 6000 tumors, she decided to write to Ekstra Bladet. the
‘It LOOKS disgusting’
Both Lotte Josefsens mother, grandmother and great-grandmother also suffered from the hereditary nerve-bindevævs disease Neurofibromatosis Recklinghausen type 1. A rare disease caused by changes in a gene on chromosome 17, and which is often characterised by freckles, tumors and so-called ’café-au-lait-spots’ in the skin. Many experience problems with the eyes and nerves, learning disabilities are far from uncommon, and in rare cases the disease can be manifested in the bones of false joints, scoliosis and knogledysplasi.
– In my family we don’t talk very much about the disease. We hate it all together. I get embarrassed and shy, and always covered up, so people should not come with the ’ad’-reaction, says Lotte Josefsen for Extra Magazine.
the 35-year-old esbjergenser means the disease physically, among other things, that she has tumors in several places on the body. ’Fedtknuder that pop up under the skin and make a bag that looks like a wart’, she describes it himself.
– People say the ’ad, what is it’ and think it is contagious. But it’s not, it is something you are born with. People just don’t know so much about it, and that’s why they say ’ad this!’ It LOOKS icky out, says Lotte Josefsen, who also struggled with the disease during his schooling, which ’was not anything to shout hurray for:
– I have learning disabilities and difficulty concentrating. So it was hard to follow with in the hour, and at the time I went to school, it was just parked in the teachers eyes, as stupid. I was often sent outside of the door, because I asked too much, and put forth his hand too much up to ask for help, she says. the
Lotte Josefsens two daughters, Tanya of 11 years and five-year-old Nadia, has inherited his mother’s disease. The son, Thomas, in four is the only one of the 35-year-old mother’s three children, who are not suffering from Neurofibromatosis Recklinghausen.
And just the children are a big part of the reason why Lotte Josefsen now choose to speak openly about the disease, which means that she never goes in the swimming pool, never have had great success with having a job, and always covers most of her body. Especially the youngest daughter, Nadia, suffers from a part under the disease, and have developed scoliosis as a secondary disease, which means that she is probably soon going to have surgery in the back.
Thomas, in four years, is the only one of Lotte Josefsens three children, who have inherited nf1. Nadia (th.) is it in the family that suffers the most of it, and have developed scoliosis. Photo: Private.
– I would at any time take all the disease, my children, and give it to myself. I think it is hard that Nadia must go through so much at such a young age. And I think that people with my illness should really think before they bring children into the world, says Lotte Josefsen, and continues:
– I would of course never ever do without my children. But I would like to have, that people are becoming more aware that they are not perpetuating the shitty disease. the
if you Suffer from Neurofibromatosis Recklinghausen, is the risk that the child will inherit the disease is 50 percent. For the four-year-old Nadia, who are the hardest hit in the small esbjergensiske family, means that she often gets so strong pain in the back, that she is neither able to crawl or walk. Right now, says the mother, doctors are investigating whether she shall have a comprehensive operation in the back.
– I just have so much hatred for the disease. It causes so many pains and deformities, and the pine, it gives my little daughter, make my heart bleed, says Lotte Josefsen.
