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5 Şubat 2017 Pazar

My twins couldn’t bear the sound of me eating lunch. Now we know why

When the scientific research backs one’s hunches, when the data strongly suggests that one is on the right side of history in a  family argument, it’s always encouraging, a morale-booster. So I was delighted to read on Friday morning of a report published in Biology Today of research conducted by a team of neurologists at Newcastle University confirming that misophonia does exist. It is that acme of modernity, a thing.


Misophonia, hatred of sound, is a 21st-century ailment, the term first being used by audiologists Pawel and Margaret Jastreboff in a paper in 2000. And it is a modern condition which caused no end of aggravation in my attempts to host a family meal in the new millennium. When our twins, Daisy and Freddie, were in their early teens, the serving of, say, Sunday lunch would be quickly followed by first Daisy – and, often swiftly thereafter, her brother – running screaming from the dining room.


In any list of parenting rules “the family that eats together stays together” is usually in the top five, often on the podium. It provides a reliable, and easy, chapter for the “how to parent” practitioner and reams have been written on the subject. With luck, Dr Sukhbinder Kumar’s report might give them reason to pause.


It certainly provides some solace for those of us whose attempts at starting, let alone completing, a Sunday roast for all the family unravelled – as they used to in our household – with the twins, heads in hands, attempting to evade the cacophony of sound allegedly emanating from my whereabouts as I attempted to complete my first mouthful of chicken.


A ridiculous state of affairs which made for, quite simply, impossible eating conditions and which chipped away at my fragile confidence in my cheffing abilities. No one wants the food they serve up to cause so much, and such evident, physical pain. Sunday lunch is meant to be a convivial affair.


But so it goes. All I was trying to do was serve up a roast chicken for my family, the minimum anyone can demand as their lot in life. But, at its most extreme, simple plating up was sufficient to trigger the twins’ misophonia. The mere prospect of my eating sometime in the near future being more than sufficient for at least one of them to get the hell out of Dodge. And while the twins being absent was preferable to them being present and in pain, the whole palaver was sufficient to render me incapable of eating.




Ninety-three per cent of people who were suffering from it claimed that eating, breathing and chewing were the trigger


Dr Sukhbinder Kumar


They had effectively neutralised what made them anxious, but the anxiety induced by the threat of what had been neutralised was so great that they were incapable of hanging around for long enough to discover that they had nothing to fear any more.


The fear of fear itself was so strong as to prevent them discovering that they had nothing to fear … but the fear of fear itself … of course. And so the mind goes.


Things are much better now that the twins are in their twenties. We merrily have Sunday lunch in front of the telly, watching MasterChef on the iPlayer, plates on our laps. A complete no-no in the parenting manual maybe, but it works for us. Watching other people cooking distracts from any gannet-style sounds that may, or may not, be being made by certain people eating.


Kumar sees further improvements to come. “In my laboratory we are interested in how the brain processes emotions, particularly from sound,” the doctor tells me as his findings are published.


“We started with a study published in 2012 in the Journal of Neuroscience into harsh sounds – like chalk on a blackboard – and recorded the subsequent brain activity in 15 or so people.”


The results were unexceptional: an unpleasant sound sounds unpleasant. It was the response that was interesting, because a swath of people contacted Kumar to ask him if he had also investigated the effect of eating and breathing and chewing. All of which are prime triggers for misophonia.


“My laboratory is headed by Professor Tim Griffiths, who is also a neurologist,” says Kumar. “So as a first step we invited a group of four people to attend the clinic he runs. After the interviews, we were really surprised to see how homogeneous the symptoms were and how similar were the triggers.”


They investigated further. “Ninety-three per cent of people who were suffering from it claimed that eating, breathing and chewing were the trigger, and anger and anxiety the dominating emotion triggered,” Kumar says.


For the misophoniac, someone eating can cause an intense fight-or-flight feeling. With hindsight, I can be grateful that one or other or both of the twins didn’t stave my head in as I was concentrating on my chicken rather than run screaming from the room.


Kumar carried out his tests and the results revealed that “the average age when people notice their symptoms is 12 and it tends to start with the focus on a particular family member, perhaps a daughter with her father, and then gradually expands to other people. It is not the loudness of the sound per se which is the trigger, but the way in which the sounds are interpreted and the meaning attached to them. It is the perception of the sound rather than the sound itself.”


The science is in. Bingo! I am not a gannet.


And, double bingo, neither of the twins’ misophonia is particularly acute, in that it hasn’t expanded to that many other people. They can, for instance, sit happily opposite a boyfriend/girlfriend open-mouthedly chomping away without flinching. Not all misophoniacs are so fortunate. Some cannot even go into work, so great is the distress caused by the trigger sounds that they might encounter. Others cannot go to the cinema for fear that, in the dark, someone might crack open the popcorn. They have no option but to see unpopular films at unpopular times.


They will be relieved, however, that their anxiety has a physical base, that it is caused by abnormal connections between this frontal lobe area and an area called the anterior insular cortex, which means that for sufferers a sound is amplified in both, whereas for others any increase in activity in the anterior insular cortex is balanced by a diminution in the frontal lobe.


“A lot of people will remain sceptical”, says Kumar, “but our data will help convince people that something real is happening in the brain.”


The next steps are to discover the exact nature of the activity being produced and to search for possible therapeutic cures. At present the misophoniac has to self-medicate via canny use of headphones or evasive action. God knows what they did before Sony Walkmans.


All data, of course, is double-edged and Kumar’s findings may well be taken advantage of by the nation’s gannets. There are people who cannot eat softly. And as lunch has moved, depressingly and relentlessly, from El Vino’s to El Desko, some think it socially acceptable to hover over their Tupperware – nearly always containing tuna – making the most godawful sounds. They now have an out: “Nah, mate, I think you’ll find it’s you that’s got the problem. Seriously, have you thought about seeing someone about your misophonia?”


MORE UNUSUAL SYNDROMES


Paris syndrome
A form of depression that affects some visitors to Paris. It is most noted among Japanese tourists, who arrive with a romantic view of the city, only to find it does not meet their expectations and that Parisians can be rude. In 2006 the BBC reported a dozen or so Japanese people having to be repatriated each year as a result of delusional states and depression caused by Paris syndrome.


Alien hand syndrome
Individuals experience sensation in both hands, but find one of them (usually the left) acting of its own accord. The syndrome can happen after brain surgery or a stroke. The “alien” hand can do complex tasks: undo buttons or remove clothes. Some individuals have been slapped or punched by their own hand.


Alice in Wonderland (Todd’s) syndrome
This condition, which sufferers usually grow out of in their teens, distorts perceptions, making objects or parts of the body appear smaller or larger than they are. Episodes normally last less than an hour.


Jerusalem syndrome
Visitors to the city experience religious delusions, such as the belief that they are a Bible character. In one case an Irish teacher arrived at a Jerusalem hospital convinced she was about to give birth to Jesus, when she was not even pregnant. The phenomenon can affect individuals of various religious backgrounds, but they normally recover after leaving the city.


Glass delusions
Sufferers believe they are made of glass and at risk of shattering. It was common in the 17th century, when clear glass was new and considered magical, but there are still rare cases today.


Foreign accent syndrome
Individuals suddenly find their voice taking on a foreign accent, usually as a result of a stroke. Between 1941 and 2009 there were 62 recorded cases.
Rebecca Ratcliffe



My twins couldn’t bear the sound of me eating lunch. Now we know why

30 Ağustos 2016 Salı

Conjoined twins starting school four years after separation surgery

Conjoined twins who had a slim chance of survival are now preparing to go to school for the first time.


Rosie and Ruby Formosa, who were born joined at the abdomen and shared part of an intestine, needed an emergency operation to separate them when they were born in 2012. Their parents, Angela and Daniel Formosa, were told the girls had a low chance of survival when medics discovered they were conjoined. But after a successful separation operation at London’s Great Ormond Street hospital (Gosh), the identical twins lead happy and healthy lives and are preparing to start school in September.


The four-year-olds from Bexleyheath in Kent were “very excited” to be starting school like their big sister, Lily, nine, Ms Formosa, 35, said. “Four years ago it wasn’t in my mind that this would ever happen,” she said. “When I was pregnant I didn’t think I’d ever see their first day at school so it is really amazing and all thanks to Gosh really.”


She said it was “heartbreaking” when she discovered the girls had the rare medical condition which occurs in one in every 200,000 live births.



Two babies in a double buggy wearing striped dresses


The twins’ mother said they were very excited to start school. Photograph: John Stillwell/PA

“At 16 weeks they sent me to King’s College hospital and it was there that they discovered the connection between the girls,” she said. “It was heartbreaking really – I was already worried that they were monoamniotic [where twins share an amniotic sac], and conjoined was the worst-case scenario.


“I was really, really, really scared and really upset because at that point I was told that there was a high possibility that the girls wouldn’t survive the pregnancy.


“And if they did survive the pregnancy they might not survive the birth, then they might not survive surgery.


“They couldn’t tell what was connecting them,” she added. “I didn’t prepare to bring them home. It wasn’t until they were in hospital and they’d had their operation that my husband started painting the bedroom and getting everything ready for them.”


The girls were born at University College hospital in London by caesarean section when Formosa was 34 weeks pregnant. Within a couple of hours of being born, they were taken to Great Ormond Street for emergency surgery because of an intestinal blockage.



Two babies in knitted hats in an incubator


The operation to separate the twins took five hours. Photograph: Family handout/PA

Praising the staff at the children’s hospital, Ms Formosa said: “They had a look and did scans and all sorts of tests and it wasn’t until they got into surgery that they saw what was going on.


“It was on-the-spot decisions as to what was to be done.”


The operation to separate them took five hours and the girls were well enough to go home when they were just three weeks old. Their mother said it felt like a million years ago that she was waiting for the girls to come out of their surgery.


“The time has just flown by, I can’t believe how fast it has gone,” she said. “They are very excited [about starting school]; their big sister is in school so they can’t wait.


“They’ve met their teacher a few times and they love their teacher.


“They’re looking forward to painting, anything messy, they love reading.


“They are very similar, they are very bubbly little girls, they are very headstrong and very determined, which I knew they were from when they were in my belly because of the way they kept growing and surviving,” she added. “I knew they were going to be determined and they are. They rule the roost.”


Great Ormond Street hospital is the leading centre in Europe for the care of conjoined twins, performing the first successful separation surgery in 1985. It has since cared for 27 sets of conjoined twins.


The Formosa family are supporting the hospital’s charity through its Back to School campaign, which is celebrating all of the children who are able to go to school thanks to care at the hospital, as well as raising funds. The campaign encourages people to share their children’s back-to-school moments on their social media pages to help raise money.


Prof Paolo De Coppi, consultant paediatric surgeon at the hospital, said: “Over the last 30 years we have treated 27 sets of conjoined twins at Great Ormond Street hospital.


“The surgery is highly complex and requires teams from across the hospital to work together and combine a whole range of expertise.


“We’re thrilled that Rosie and Ruby are starting school this September.


“It’s always a joy to witness patients’ progress and to hear that they are reaching new milestones – this makes the job we do all the more rewarding.”


Tim Johnson, chief executive of Great Ormond Street hospital children’s charity, said: “Thanks to the world-class care given to seriously ill children from across the UK at Gosh, more children will go back to school or enjoy their first day at school.


“We’re encouraging people from across the UK to share their back to school or first day at school moments and donate to help raise money for the hospital. Text SCHOOL to 70020 to give £3.”



Conjoined twins starting school four years after separation surgery

12 Mayıs 2014 Pazartesi

Rare conjoined twins born in Sydney with a single entire body

Extremely rare conjoined twins born with one particular physique, a single head and two faces have astonished Australian doctors right after managing to breathe on their very own.


Faith and Hope Howie, who have an incredibly uncommon situation called diprosopus, had been born on Thursday at Westmead children’s hospital in Sydney.


The infants share a entire body, limbs and a skull, but every have their personal brains and a set of identical facial attributes.


There have only been 35 similar cases recorded around the world and none of them have survived.


Their parents Renee Youthful and Simon Howie, who currently have 7 young children, say the infants have astounded physicians after becoming capable to breathe on their personal and are in a secure condition.


The twins have been born at 32 weeks by emergency caesarean during a often harrowing labour where they appeared to be struggling to breathe.


“They managed to find a heartbeat, but the breathing was really shallow,” Howie informed the 9 Network’s A Recent Affair.


He stated he was at first shell-shocked when he saw his infants, but also felt prepared.


“I am proud as punch to see them make it this far, the place all the odds were towards us,” he said.


Young explained she considered her twins have been “incredible”. She mentioned: “I feel they’re gorgeous, Simon thinks they’re beautiful, truly that’s all that issues.”


Medical doctors have advised the dad and mom that they do not know what the future holds for the infants and they had been even now in “unknown territory”.


Physicians identified the babies’ issue during a program ultrasound at 19 weeks and their mothers and fathers went against medical tips when they continued with the pregnancy.



Rare conjoined twins born in Sydney with a single entire body

4 Nisan 2014 Cuma

Senegalese law bans raped 10-12 months-outdated from aborting twins

MDG : Senegal women

Senegalese lawyer Fatou Kiné Camara has branded her country’s abortion law one of the harshest and deadliest in Africa. Photograph: Zena Zephinie




A 10-year-outdated woman who is pregnant with twins right after she was raped by a neighbour has been forced to proceed with her pregnancy right after human rights campaigners misplaced their battle to secure a legal route to abortion.


The plight of the woman, who is five months pregnant and lives in Ziguinchor in the south, highlights the hefty cost ladies and youngsters are having to pay for a Napoleonic law on abortion that is nonetheless in force in the former French colony.


“She is going to have to go by means of with the pregnancy,” said Fatou Kiné Camara, president of the Senegalese females lawyers’ association. “The ideal we can do is hold up strain on the authorities to make certain the woman gets standard scans and totally free health-related care.


“Senegal’s abortion law is one particular of the harshest and deadliest in Africa. A doctor or pharmacist located guilty of having a role in a termination faces being struck off. A lady located guilty of abortion can be jailed for up to ten many years.”


Forty ladies were held in custody in Senegal on fees linked to the crimes of abortion or infanticide in the first 6 months of final yr, official figures display. According to estimates, hundreds of ladies die every 12 months from botched unlawful terminations.


“For a termination to be legal in Senegal, 3 medical professionals have to certify that the girl will die unless of course she aborts quickly. Bad folks in Senegal are lucky if they see a single doctor in their lifetime, let alone three,” Camara explained.


“A single healthcare certificate fees 10,000 CFA francs ($ twenty), which is prohibitive. We had a earlier situation of a raped nine-year-outdated who had to go via with her pregnancy. We paid for her caesarean but she died a number of months soon after the infant was born, presumably since the bodily trauma of childbirth was too excellent.”


The women lawyers’ association is lobbying MPs to align Senegal’s abortion legislation with the African charter on women’s rights, which the nation ratified ten many years in the past. Its provisions – legal healthcare abortion in cases of rape and incest, or the place a woman’s physical or mental well being is threatened – have by no means been added to the statute guide.


“The greatest unfairness is that the poor are the victims of our archaic legislation,” stated Camara, a law professor at Cheikh Anta Diop University in Dakar. “Any individual with adequate money can very easily have an abortion at a personal clinic. But if you are poor you are expected to go via the legal motions or chance your lifestyle in a backstreet clinic.”


Six many years in the past, the association opened a legal drop-in centre in Dakar to much better deal with such problems. “We all perform for free of charge and we are open to everyone. But it is very clear that women’s and children’s rights are the ones that are most frequently ignored,” Camara said.


The team is skilled in trauma counselling and deals with a range of inquiries, from how to register a birth to in which to hide from an abusive husband. The association can be contacted in person or through a freephone number.


“Most of the calls are from rural men and women and concern residence rights and accessibility to land,” mentioned Aminata Samb, 25, a law graduate who functions with the association. “This morning a female rang to say her husband had married another woman and was no longer taking care of her and her kids. I inform the callers of their legal rights and tell them exactly where to turn, must they want to workout them. But several ladies just want to tell their story again and again. It makes them truly feel much better.”


Muslim Senegal is constitutionally secular, but customary law is in widespread use. At least ten% of girls are married just before 14, and men can have up to 4 wives. But, according to Camara, religion and polygamy are not the lead to of the rights shortfall. “Ignorance is the biggest enemy and it is a dilemma both amongst ordinary men and women and amongst folks they search up to, like religious leaders,” she said.


Because 2008, the women lawyers’ association has trained more than 1,000 parajuristes, or legal lay folks, to boost the managing of this kind of concerns. They are ordinary guys and ladies who have been given a grounding in the law, enabling them to act as a initial port of legal phone in their communities.


Moussinatou Dramé, 29, a principal school teacher, works as a legal lay man or woman in Pikine suburb close to Dakar. “I usually find myself mediating, among a husband and wife or among two sides of a loved ones. I also consider to describe to females the value of registering their children’s births and, if achievable, of getting a civil wedding ceremony, as well as a religious one particular, to improve their legal rights.”


Amadou Aly Kane, a human rights attorney, believes the country’s parajuristes, even though not exclusive in Africa, played a vital role in bettering access to justice for ordinary people. “They are much more accessible than lawyers not just simply because they are free but since they are current at the grassroots of society where illiterate men and women would otherwise have no accessibility to the law,” he stated. “There is no doubt that they are contributing to the improvement in human rights in Senegal.”


Camara explained the parajuristes, who uncovered the plight of the ten-yr-previous, have been her eyes and ears on the ground. Terminations in such intense situations should be made legal, she additional. “Senegal have to legalise medicalised abortion so that we never see any much more situations like hers. Had we had time and had the girl’s mother and father been inclined, we could have asked a judge to contemplate guaranteeing immunity from prosecution to an [abortion] doctor,” she explained. “Even so, the family members is bad the process is tough enough for them. They had been just pleased when the rapist was arrested.”


Alex Duval Smith travelled to Senegal with the EU, which supports the drop-in centres




Senegalese law bans raped 10-12 months-outdated from aborting twins