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Contents
Research
Insulin Sensitivity
Recent Papers
View of TS2000
Flight of Fantasy
Conference Clothes
Crystal Maze Update
Sound Familiar
On behalf of the research team at the Behavioural Sciences Unit, ICH, 30 Guilford St London WC1N 1EH, Kate Elgar writes the following update on recent research involving adult women with Turner syndrome.
Those who took part in the research will already have received the following update but the researchers were keen to share the results with all with TS and their families as research is important to all, not only those who took part. They and the Society wish to thank all those who took part in their recent research project for all the time and effort you devoted to help advance our knowledge of Turner syndrome.
The Society would also like to thank everyone who takes part in research projects, the knowledge gained is invaluable to those involved with TS, be they an individual with TS or health professional involved with management of TS.
Our study looked at many abilities including face recognition skills. We compared the results of 23 women with Turner syndrome to 23 women of the same age who did not have Turner syndrome (the control group). Firstly, it is important to mention that there was huge variation across the group of women with Turner syndrome. What we found for the group, as a whole, is presented below. However, these are average results and do not necessarily reflect individual performance on the tasks.
As a whole, the group of women with Turner syndrome had entirely normal verbal abilities. Women with Turner syndrome were good at describing similarities between words. They also demonstrated good levels of general knowledge and had normal short-term verbal memory when asked to repeat back lists of numbers. Memory for words was also more than adequate in the Turner syndrome group.
As has been previously reported, some of the women with Turner syndrome had difficulties on a test of mental arithmetic.
Women with Turner syndrome were more likely to have difficulties on tasks that require the use of non-verbal skills. For example, when asked to arrange coloured blocks to copy a pattern, or spot what is missing in a picture, the women with Turner syndrome often did not perform as well as their peers. Some of the women with TS were also slower at writing symbols next to corresponding numbers.
On a task where the women were asked to copy a complex geometric pattern, the women with Turner syndrome performed at normal levels. Overall, the group produced good copies of this figure. However, it is interesting to note that many with TS commenced the drawing of the pattern in a different manner to that adopted by the group of women without Turner syndrome. Whilst the non-Turner women were more likely to draw the overall outline of the figure first, women with Turner syndrome were more likely to start by drawing a specific feature or detail and gradually building up the overall outline. Therefore, it would seem that both groups of women were able to copy the pattern well, but the methods used to do so were somewhat different. Recalling this pattern after a thirty-minute delay proved problematic for some of the women with Turner syndrome.
Both groups were tested on tasks that required them to match peoples' faces from different angles and viewing conditions. Some of these tasks were quite difficult as often part of the face was obscured due to lighting conditions or the face being turned away. These tasks caused slight difficulties for some of the women with Turner syndrome in particular when the viewing conditions obscured part of the face.
Whilst we were completing the face memory tasks, some of the women mentioned that they experienced mild difficulties in remembering faces in every day life. This was borne out by the test results. When asked to recognise a number of faces that had been shown earlier, many women with Turner syndrome had somewhat poorer memory than the non-Turners group. We also assessed recognition for famous faces. Some women with Turner syndrome recognised fewer faces than the control group. However, as a group, your verbal knowledge of famous people was good. Recognition of famous faces was particularly poor when external details of the face (such as the jaw and hairline) were obscured – suggesting that some women with Turner syndrome may need to see more features in order to recognise a face.
We asked all the women to look at some pictures of peoples' faces and decide how they thought they were feeling based on their facial expressions. The group with Turner syndrome was able to identify some of the emotions well. Happiness, surprise and disgust emotions were detected nearly as frequently by the Turner women as the controls. However, for fear, sadness and anger, the group of women with Turner syndrome had more difficulties, with many women having difficulties at identifying at least one of these emotions.
You may wonder what we can do with the above research findings to help women and girls with Turner syndrome. We hope the research will be useful in a number of ways.
The first step towards overcoming any of the difficulties, that may occur in Turner syndrome, is to identify the nature of these difficulties and make people aware of them – individuals with Turner syndrome, GPs, parents, teachers etc. We hope to incorporate the information from this study, in particular our findings regarding face and emotion recognition, into a fact sheet that we send out to schoolteachers. This fact sheet is compiled in collaboration with the CGF and the TSSS. We hope, through these organisations, to be able to inform many of the teachers of children with Turner syndrome about the psychological nature of the condition and the possible aspects of daily functioning that it may effect.
Moreover, we hope that the knowledge we have gained of the syndrome will be able to be used to directly help adult women with Turner syndrome. As many of you probably agree, the wellbeing of adults with Turner syndrome needs to be more fully addressed and we hope that you will feel we have made a step in the right direction towards doing this. We believe that face and emotion recognition abilities may be of particular importance when operating in a group situation, such as in a classroom or a workplace such as an office. We also feel that it is important to stress that these difficulties do not always occur and certain individuals with Turner syndrome have no such problems. Our aim is not to stigmatise but rather to educate!
Future directions that our research will take have been informed both by the results of the study and by the interesting conversations we have had with many of you. It has been an enlightening experience to meet with so many articulate and bright women, who are able to express, with clarity, what it means to be an adult woman with Turner syndrome. In many ways, this is as important to us, if not more so, than the results of the tests.
Another point that we would like to make clear, is that all of the women used in this study were functioning very well in their every day lives. Many of you have good jobs, have had a good education and are leading full lives. There may be a few tasks on which some of you have difficulties but this doesn't in any way mean that you have difficulties in all aspects of psychological functioning or that these difficulties are insurmountable.
We would like to thank again all those who participated in this research and we hope that the above summary is of interest to you and others with TS. If you have any comments or questions about the research, we would be happy to hear from you. You can write to us at the above address, telephone us on (020) 7831 0975 or email us at kelgar@ich.ucl.ac.uk. We would be interested to hear your views and hope that we will have the opportunity to meet with you again as our research progresses.
Prof David Dunger & team, Cambridge
This research is still in its early stages and a number of Society members have been invited to take part. So far 10 women with TS have volunteered but 30 more are needed. We hope to publish their experiences in future editions, similarly progress reports from Dr Amin.
The research programme has been streamlined and will not now require an overnight stay and will probably only involve 2 hours of tests. The age limit is extended to 40-45 years of age. Anyone interested in the research should contact Dr Rakesh Amin direct on 01223 76944 or e-mail ra249@cam.ac.uk he will be pleased to explain the whole procedure and tests involved.
The medical journals have been reasonably quiet but there was an article in Journal of Clinical Neuroscience 7(4):341-3 2000 July which takes seriously the slight but real risk of having slightly weaker blood vessels in TS which means that with increased blood pressure which is not properly controlled there is an increased risk of spontaneous haemorrhage mainly from the sensitive areas like the brain. The main significance of the paper is to seek treatment for even mild high blood pressure and not ignore it.
A second paper by JossEE et al in Hormone Research 53(1):1-8,2000 looks at the effect of GH and Oxandrolone on glucose metabolism and although a high proportion of the girls on combined treatment showed an increase in their fasting levels of Glucose this appeared to revert to normal after the treatment was complete. This is an important finding for reassurance to those on this treatment.
Members may also be interested in a paper by D I Johnston et al "A multicentre trial of recombinant growth hormone and low dose oestrogen in Turner syndrome: near final height analysis" recently published in the Archives of Diseases in Childhood. Ref Arch Dis Child 2001;84:76-81 For those with internet access it can found be at www.archdischild.com
Also the British Society of Paediatric Endocrinology and Diabetes have begun to publish position papers on the various endocrine conditions. Their position paper on TS "Efficacy of Growth Hormone Therapy in Turner's Syndrome" EJ Gault & Dr MDC Donaldson, Dept of Child Health, University of Glasgow can be found on the BSPED internet site http://bspe.shef.ac.uk
by Abby
[Editor's note although a trifle long I decided not to edit out too much of this essay, in order that the excitement and enthusiasm portrayed by Abby could be felt by all who read it.]
After a marathon fundraising effort Abby and her friends Judith, Jo and Emma were all set for their trip to Chicago. Abby continues the tale............
The night before the flights, Jo and her mum [who was one of our chaperones] came to stay and, having got a very hyper Jude on the phone, our excitement grew. In the last minute rush of packing, I made sure I took…well everything I needed to look good when 'cruising the freeway'! At the airport the next day we all met, still not quite believing that we were going to America in a few hours. Having cleared customs we went and sat in Starbucks [in training for the States!] and had a coffee. Within thirty minutes, we were boarding American Airlines flight AA54 to Chicago. Although we weren't all sitting together, by annoying all the passengers around us, it was possible to talk for the 8-hour flight.
We got off the plane and stepped into Chicago's O'Hare airport at one o'clock Chicago time and went to call the cab that was being sent to take us to the Schaumburg Hyatt Hotel, where we were staying. We got a bit of a shock when our 'cab' pulled up and we realised that it was no ordinary taxi, but a stretch Limo! To our delight we got inside to see the television, drinks bar and ceiling with lights that changed colour [my personal favourite bit!]. Feeling like stars, we sang our hearts out [this time annoying the driver] and, realising that we could make quite a good sound, decided to enter the talent show during the Conference.
Within half an hour we were at the hotel and in our rooms, and getting changed to use the pool. The hotel had three pools, an outside one, inside pool and Japanese bath. However, it was easier to remember them as the really cold one, the warm one and the really hot one. We had them all to ourselves, and again [noticing a pattern?] made a lot of noise.
Having had a few minutes in the sauna, we dried off and got changed to go and try out the Woodfield Shopping Mall. This was not your average mall, oh no; this was one of the biggest malls in America. Well you know what they say, when in Chicago shop…or at least we did - constantly. Woodfield had over 200 shops along with over 20 restaurants and cafes. During our stay we naturally had to sample each and every shop and dine in at least 3 restaurants. Having got started on our task, we spent an hour cruising the shops before feeling ever so slightly peckish. Having realised that, due to the 6 hour time difference we had missed our 'normal' dinner slot by about 5 hours, we went to eat in 'Vie de France', a French place, that didn't actually seem to serve too much French food, but it was lovely all the same. We finished the meal, and realised that our biological clocks thought it was 1a.m we returned to the hotel to catch some sleep. Despite the tiring journey and the fact that it felt like the small hours of the morning, we didn't let ourselves go to sleep for another hour or two. [And we were reliably informed the next morning, we didn't let Frances or Jill next door get to sleep for another hour either!].
Having fallen asleep at 9p.m. Chicago time, we were roused early by Frances coming in at 8a.m to get the milk for the coffee from the fridge installed in our room [although I'm sure it was just a ploy to wake us up] and after at least half an hour of moaning we got up. Having all taken our turns in the bathroom, which wasn't pretty due to the fact that four teenage girls were sharing one bathroom only, we went down to have breakfast. When we'd polished off the rather interesting selection served, which was rather different from an English breakfast, we joined the party that were going to 'downtown Chicago' for the day. We boarded the bus, and after half an hour entered the dizzying centre of Chicago. It's safe to say that Chicago central does NOT have a building that's less that about 100 feet high. To put this in perspective, Chicago contains one of, or possibly the biggest building in the world [depending on what count you judge it on], the Sears Tower. We were stumped when driving down the freeway as to exactly which one of them it was.
We got off at the Chicago Art Institute, which particularly houses impressionist paintings. While Jill went to look round 'Pharaohs of the Sun', the rest of us explored the main galleries, guided by a very knowledgeable Frances explaining as we went. We all soon found out that Chicago houses some of the greatest paintings ever painted by 'what's-he-called', a large collection of sketches by 'ooh-I know him!' and many sculptures by 'didn't-I-learn-about-that-in-first-year?'. Having taken in all this, we decided to phone for a taxi back to the hotel. We arranged for it to pick us up at the 'Water Tower', a shopping centre we'd passed on the coach, thinking it was an easy pickup point. Well, yes it was, but it took a round tour of Lake Michigan to do the '10 minute journey' Frances and Jill had promised. Having eaten at 'Chicago's Flat Sammies' while listening to street jazz, we got in the taxi back to the hotel, or more precisely, the mall.
We were left to our own devices to have a proper explore of Woodfield as our chaperones went off to pamper themselves in the beauty parlour. Having bought presents for our friends family, and naturally us too. While shopping we bumped into Claire, yet another friend who was in the process of discovering the mall too, and we stood talking in the middle of the lower floor for quite a while. We met up again with Jill and Frances, and returned to the Hotel to get ready for the introductory session, which was largely a getting to know you slot. Having eaten the meal, we went to the teen group, and discovered the Karaoke machine. Having sung along to Britney, Christina AND Mandy we retired to our rooms after another exhausting day.
Not surprisingly, Frances needed the milk again at 8a.m. the next morning. We got up [about an hour later, but we did get up] and went down to breakfast, again to meet up with Claire. After breakfast, we went to our first workshop on healthy eating, which immediately made us feel guilty about the 3 croissants we'd all had. We were told all about having a balanced diet and how to eat properly and, although we all had had such talks at school before, we got to try various 'healthy options' at the end such as tofu, Soya nuts, Soya beans and more. This was followed by a 'big sister – little sister' set up, which involved us all being paired up with one of the younger girls in the pre-teen group. My little sister was called Kimberly, who was shy at first, but soon became extremely chatty and reliably informed me that she had a debit card, and 'couldn't wait to hit the mall'. She's nine! She was, however, a real cutie and we got on extremely well during the rest of the conference. After this, we again boarded a bus that was bound for Chicago, and the sight of the buildings as we were coming in took our breath away even the second time. This time though, we got off at 'Pizzeria Due', generally referred to [as we discovered from all the Americans we met as the best pizza in Chicago.] This turned out to be true, as the pizza we had was fantastic, and we all left stuffed full of the huge pizzas we'd polished off. I'm sure the healthy eating talk just flew over our heads. We got back on the bus to drive to the Sears Tower, as we were going all the way up to the top, to get the best view possible of Chicago. We entered the small building next to the tower, and went up in a lift, a few floors, into the main building. Having seen a short film about Chicago and the Sears Tower, we continued through to the second lift. We got in, and watched the floor numbers whiz past as we climbed all the way up to the 114th floor, the 'Skydeck'. The Skydeck, built only recently, has a 360° view, along with digital computer displays that show you what to look out for in the city below. I have to say that, despite not originally being able to spot the Sears Tower amongst the skyscrapers, when you're at the top, all the other buildings that seemed so huge are dwarfed and you look down on them all. Having taken many 'here's me, at the Sears Tower' pictures, we descended down to the ground again, along with very sore, popped ears.
It was soon time to return to the hotel, which we did, and found ourselves with a few hours to spend before the evening activities – and what better way to spend these then [I'm sure you've guessed it] at the mall. By now we had discovered our favourite shops [although not where they were] and we went directly to Pacific Sunwear, then Forever 21 followed by Limbo Lounge. We decided to eat in the Rainforest Café and so planned the last minute parts for the talent show among the huge butterflies and mountain gorillas. We rushed back to the hotel having polished off our rainforest-friendly burgers and prepared to sing 'I Know Him So Well' from Chess. Along with backing from the Philadelphia Philharmonic [well, on tape anyway] we performed the piece, to rapturous applause, which was very flattering and immediately gave us heads the size of footballs. Then followed a live band performing many Beatles songs and other golden oldies. They were excellent, but being English, we felt obliged to criticise the lack of Scouse accents. We danced for a couple of hours, and then went to watch television before yet again going to sleep
After yet another milk-orientated awakening, we got up for our first full day of programs. We started with 'self esteem' which we had done many a time before at English conferences, but it was certainly very interesting to get views from an American group, as many of them saw things in a different way. This was followed by health concerns, which basically focused on any problems people had with their treatment and so on. Again the differences came through as we realised that many of the Americans had to pay for their own growth hormone, as they don't have anything like our NHS. It was also apparent that many were concerned about maths, as they would have to do maths at all stages of their education, even university, due to the different structure of their Uni system. We also found that most of the girls had to see many different doctors to be treated for different aspects of Turners. At the end of this session, we were told that we had won the 'best vocal performance' award from the talent show, making our heads and egos swell a little bit more. After lunch in the marquee, where we all discovered that we weren't that keen on the American passion for iced tea [' but why is it cold?']. We returned after a very delicious dessert to a session on makeup. This was a little basic for us as we had already learnt many a year ago how to lay it on with a trowel, but there were some interesting comments, and we did get free samples at the end. After this had finished, we had time before the closing banquet that evening, and decided to make use of the discount card for the mall we'd been given when we'd first arrived. One of the things on offer was a free makeover at Lord & Taylor, so we went into the rather swish apartment store to ask. Jude and I were soon seated at Chanel, with Jo and Claire over at Clinique, and we came out looking gorgeous, and about 20 years older than we were. We had to run back to the hotel (again) and get ready for the international banquet in the grand total of 20mins. At least we already had the make up bit done!!
As this was an international conference, each country present got to parade their flag at the start of the banquet. I was asked to fly the flag for England, and as there were no Scottish teens present, Emma carried the Scottish flag out with me. We then sat down to our meal, which was lovely and proceeded to take photo after photo after photo along with a few more photos. With all the posing finished, along with the food, we were asked to reprise our talent show entry. However, this time the Philly Phil were booked up, and we had to do it unaccompanied. Despite the odd bum note, people were on the whole really impressed. After even more photos, we decided to hit the pool again. This time, it wasn't at all empty, and I think that most of the delegates [plus the odd slightly bewildered other guest] were in the Japanese bath, singing anything that came into their heads. Having enjoyed the interesting experience of swimming outside in a freezing cold pool in the pitch black, we got dry and cuddled up in our beds to watch 'the X Files' on our last night on American soil. Having decided against ordering huge amounts of ice cream from room service and charging it to our bill [which, handily was being paid by our parents] we sat and talked into the night before falling asleep.
The next morning, being our last morning, was filled with picture taking and address writing as we said goodbye to all the friends we'd made from all over the States and further. We all had a picture taken with our little sisters, and waved off those who were leaving before lunch. We went for a final dose of retail therapy in Woodfield [sob!] and returned to the hotel laden down with the spends of our last dollars. We brought down the suitcases and waited for our limo, now feeling like pros, used to being shipped around in leather upholstered 12 foot long luxury cars –ah well, we can dream can't we? We clambered into the back, and sat in almost silence as we returned to the airport we'd arrived at just a few days before.
The check-in process was quick, and we went to buy magazines and chocolate for the flight. After an hour or so, we boarded the plane. We were delighted to find that there had been a problem with the seating plan, and although we were told that we would all be sitting apart from each other, we could actually move up a bit and talk. Having taxied to the runway, we prepared to say 'see ya!' to Chicago, but were soon informed that there was a technical fault that would delay departure by half an hour or so. This passed quite quickly, and we taxied back to the runway, and took off, waving maniacally out the window. We did, however find ourselves looking at the same departure gate again, two and a half-hours later, as we were forced to land again due to an ill passenger. Great. After the whole plane was checked over, and the whole of the crew and passengers were about as fed up as humanly possible, we took off again, 4 hours late, and half-comatose. They fed us and then we all dropped off to sleep as we winged our way back to England.
When we woke up, crick in neck included, we were about an hour away from Manchester Ringway. We were served our breakfast, and sat back, still half asleep as we descended onto the very wet runway. We sleepwalked off the plane, and grabbed our luggage before walking out into arrivals and meeting up with the rest of our families. After sad, if not somewhat groggy, goodbyes, we left each other after a trip that we know we won't forget in a hurry. I know Jude and I would like to thank Jill and Frances for looking after us for the duration of our transatlantic expedition because we could never have found better chaperones – who else would let us shop that much? And if Jude, Jo, Emma, Claire, Frances and Jill are free, how about going to Australia in 2003?
by Lisa & Sophie (3½) Cobbe
One of our advisers, won a Flight of Fantasy ticket in the raffle held during the Conference last year. Since both of his own daughters and all his nephews and nieces are too old to admit to believing in Santa he donated his prize to his next-door neighbour, Sophie. It was a great success as Mum, Lisa tells us.
In December 2000, my daughter Sophie and I were given the opportunity to go on a Flight of Fantasy to see Santa. Not sure what to expect, we arrived at Birmingham Airport and checked in. Sophie was given badges and T. Shirts to wear for the trip. We then went to wait in the boarding lounge and were given a drink and snacks. The children were all excited, some dressed up, some with faces painted, and it was a lovely atmosphere.
Time to board the plane, Sophie couldn't wait, it was such an adventure. (She had never flown before). Everyone got on and belted up. Time to go. The kids all counted down to ten and off we went with lots of cheers and laughing. The cabin crew was great; they really played the part, saying Santa was flying around outside and all the kids were looking for him. We had lunch (sandwiches and lemonade). Sophie thought that was just great. Then Santa arrived to the singing of carols. It was great fun. He gave all the kids an envelope (with a £10 Argos voucher in it) and spoke to everyone. The flight lasted 1½ hours. We flew up to Manchester and across to Ireland then back to Birmingham. When we landed, we were told someone was waiting to see us all. We walked to the Airtours section and there was Santa again. Sophie couldn't believe it. She went to see him again and came away with so many presents (a crayola colouring kit set and a big bag full of T. Shirts, toys, sunglasses and so much more – it was a real treasure chest.
We had a fantastic time. A smile never left our faces from the time we arrived to the time we left. Everyone involved worked very hard to make this a very special magical day for all the children and even grown-ups. I know it will be a day we will never forget.
Lastly, a big thank you to the TSSS and Airtours for letting us have what was a truly a Flight of Fantasy
The TSSS would like to thank Airtours for their generosity in donating 5 Flights of Fantasy to the Society & David Burns for nominating us. There is not room to print everyone's story but Lisa & Sophie's is representative of the enjoyment had by all.
Members of the Committee have suggested a useful way to raise funds for the Society. This will take the form of a Nearly New Clothes Sale. NOT a Jumble Sale This suggestion could be the solution to several problems:-
What to do with all those worn once or twice items of clothing after a Spring clean out?
What to do with the outgrown but hardly worn children's clothes after the same Spring clean out?
What can I do to help raise funds for the Society?
Well this is your answer, bring all those unwanted but hardly worn items to the Conference in October and at the same time kit yourself out with a new wardrobe and by doing so raise funds for the Society. Bingo!
TSSS Lapel Pins are now available, £1 each. If you would like some for yourself, or to sell to your friends, then please contact Arlene at the TSSS office. Similarly for TSSS pens. Every penny raised through selling these items is extremely valuable.
Helen attended a BENEFITS Update conference last month and has provided the following information to be added to her earlier information sheets.
Awards of Working Families' Tax Credit that began on 3rd October 2000 include an additional credit of £22.25 per week for any child receiving DLA.
For further information call 0845 609 5000
People receiving Working Families' or Disabled Person's Tax Credit who have a net income of £11,370 or less are entitled to the following:
Free NHS prescriptions
Free dental treatment
free sight tests and full value of optical vouchers towards the cost of glasses or contact lenses
Refund of travel costs to hospital for NHS treatment
For further information call 0800 91 77 71
The qualifying age for receiving the higher rate mobility component of DLA is being reduced from 5 years to 3 years old from 9th April 2001. The qualifying conditions will be just the same for those severely disabled younger as they are for those aged 5 or over:
They cannot walk at all
They are virtually unable to walk
The effort of walking poses a serious risk
They are severely mentally impaired with severe behavioural problems and they qualify for the highest rate of the care component of DLA because they need personal care both day & night
The qualifying age for the lower rate of the mobility component is unchanged.
When a child age 3 or 4 becomes entitled to the higher rate of DLA mobility component, the benefit may be used to obtain a mobility vehicle in the usual way.
If your child is age between 2½ and 5 and already receiving the care component of DLA you will be contacted. Where DLA is not being paid and your child will be 3 years old on or before 9th April 2001 a claim should be made on their behalf but no later than 9th April 2001. Entitlement cannot start any earlier than the date of the claim so do not delay.
DPTC was introduced in October 1990 to help people with an illness or disability to return to, or take up work by topping up earnings. However, many people felt that the qualifying rules did not do enough to help people who became long-term sick or disabled while they were already in work. The new rules introduced in October 2000 are designed to help people who have recently become sick or disabled to remain in work even if their illness or disability means a reduction in their earnings. DPTC will now be payable to people:
Who, for 20 weeks or more have been in receipt of Statutory Sick Pay, short term lower rate Incapacity Benefit, Income Support paid on the basis of incapacity to work and;
Who have an illness or disability which puts them at a disadvantage in getting a job and is likely to last for at least a further 6 months and;
Whose continued employment will mean a reduction in earnings of at least 20%
For further information call 0845 605 5858
Currently only in pilot form, these interviews are likely to become a central feature of the Social Services system.
A Job Centre interview with a claimant conducted for any of the following purposes:
Assessing a person's prospects for existing or future employment.
Assisting or encouraging a person to enhance their prospects of such employment.
Identifying activities, which a person may undertake to strengthen their existing or future prospects of such employment.
Identifying current or future employment opportunities suitable to a person's needs.
Identifying educational opportunities connected with existing or future employment prospects or needs of the person.
Anyone under 60 and not in paid work who claims among other benefits:-Income Support, Incapacity Benefit, SDA, Invalid Care Allowance
Failure to attend an interview without good cause will mean disqualification from that benefit. Good cause includes:
Difficulties understanding the obligation due to learning, language or literacy difficulties
Medical appointment which is unreasonable to cancel
Disability
If anyone has already had experience of these interviews whether good or bad perhaps you could let us know?
The Editor is delighted to be able continue this popular column. It is apparent that members are benefiting from sharing their experiences with others. It takes courage to share painful experiences but in doing so it can give hope to others. Sarah has written to share her experience of having an eating disorder and this will hopefully encourage others to seek help whatever the problem.
Summer is a time of year when bodies and body image come very much to the forefront of our consciousness: do we dare to go topless/naked on the beach? Shouldn't we be at least trying to live on seasonal salads after the excesses of Christmas and Easter? How can we wear short skirts when our legs aren't tanned? How do we maximise our powers of attraction for a potential holiday romance? These questions and hundreds like them all pose, and perhaps help us to evade, the crucial question of how we relate to our own bodies; how we feel about them and in them. It's a minefield, and make no mistake that there are casualties – thousands of them. Dysmorphia (pathologically negative body image) anorexia and bulimia kill and maim.
Body image, and in particular the ways in which it relates to nutrition and weight, is a highly political issue for women in the Western Hemisphere. Thinness is associated with high status in our society: it is visible evidence of self-discipline and conformity to an externally imposed (through many mediums) more of attractiveness and femininity; evidence that a woman has resources, in terms of both time and finance, to devote to her body. Furthermore, in a society where instant gratification is seen as the norm, it follows that a thin person cannot have hungers; will not take up more space in the world than is considered appropriate.
I feel that we as Turner Syndrome (TS) women, may have particular problems with body image. At a superficial level these problems might be related to our lack of physical stature and the fact that some of us may tend to put on weight quickly and easily, or may have neck-webbing, pronounced epicantic folds or fish-shaped mouth, or a proliferation of pigmented naevi – the stigmata of our condition (I refer you to any good clinical literature). Yet I feel that for some of us the problem is an uneasy sense of something missing (call it chromosomes, hormones or reproductive capacity); that we do not exist as whole, complete women. (Interestingly, Vasta, 1995, Child Psychology: The Modern Science, 3rd Edition, San Francisco, Freeman cites us as having 'ultrafeminine' personalities.) Thus we might argue that our condition itself is a further disempowerment in the struggle of all women everywhere to live comfortably and happily in their own bodies, free from judgement, fear and the threat of isolation.
It is this sense of incompleteness that I believe led (interestingly, several years prior to diagnosis) to my own eating disorder. And, oddly, looking back I feel that diagnosis helped me to resolve my issues around body image. I have never found the state of ignorance blissful and diagnosis enabled me to answer hitherto unanswerable questions about my body.
As with most anorectics (I was subclinical) my eating disorder was centred on control. One of course does not perceive the horrifying paradox – that the body whose hungers you are apparently subduing and controlling actually eventually proves to have a will of its own and makes you hungry for the hungers themselves. I also needed to impose order on a somewhat chaotic and lonely lifestyle of long, irregular hours of physically and emotionally demanding work, inappropriate sexual liaisons and frantically 'doing the rounds' of family and friends, from whom I desperately needed approval and approbation.
My employers (doctors) saw what was going on and offered me a sabbatical. I refused, wondering what all the fuss was about. Significantly, it wasn't until one of them rang me at home to express his concern while I was off sick with a supposed kidney infection (which later proved to be low back strain, probably linked to low spinal bone density) that the penny dropped and I realised that I was ill.
Well, the rest is history. I sought professional help and met the man who is now my husband. He constantly assured me that he found my body beautiful (something he still does) and took an active part in my recovery, attending group therapy meetings, unobtrusively monitoring my eating and showing me in subtle ways how far from 'normal' eating I had come. He has since confessed that he found this period of our life difficult and stressful and certainly we had many tears and harsh words. He is still very patient with the 'does-my-bum-look-big-in-this' syndrome!
With any addictive behaviour one is always in recovery – there are good days and bad; days when I'll have a packet of chocolate biscuits for dinner or weigh myself after every cup of tea and days when my image in the mirror seems to glow with vitality and confidence.
But the point is that abnormal eating patterns (the grapefruit diet, the Hershey bar diet, and the one-meal-a-day diet) are distressingly widespread among the female population supposedly not eating-disordered. Please let's remember that we have a right to appetite; to good wholesome food; to be substantial in affect and further, that Turner Syndrome should not perhaps mean what is missing from us, but is an integral part of us as confident, attractive women who need to know how to take care of themselves.
Eating Disorders Association website - www.edauk.com
Helpline 01603 621414 open 9am - 6.30pm
Youth helpline 01603 705050 open 4pm - 6pm
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