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Contents
NUTRITION & DIET: A GUIDE FOR THE TURNER WOMAN
A Quick Guide to the New Tax Credits
Being overweight is a common problem for women with Turners Syndrome. Overweight can increase the risk of developing diabetes mellitus, and high blood pressure, diet and exercise will make these conditions easier to control. Women with Turners Syndrome are also at increased risk of developing osteoporosis. By ensuring that your diet is rich in those nutrients which are vital to bone strength, and byavoiding those which may increase bone loss, the likelihood of osteoporosis may be reduced.
Some of the problem of weight is to do with how much energy is burnt up everyday. A Turner woman burns fewer calories than other women do but not because of a problem with 'metabolism' – it is all a matter of height.
If we choose two women of similar build, one with Turners and one without, we can estimate the daily energy (calorie) requirements needed in each case. A Turner woman who is 5' 0" (1.52 m) tall and who weighs 58 kg will require around 1325 kcal at rest and about 1850 kcal for normal active life. A woman of height 5' 6" (1.68 m) and weight 71 kg will require around 1450 kcal at rest and about 2050 kcal for everyday life. This rough calculation illustrates that for the same build, a shorter woman will need to eat less than a taller woman. The difference here of around 200 kcal per day translates into 3 biscuits or a small slice of cake each day, or around 4 rounds of sandwiches each week!
In order to lose half a kilogram (1 lb) there has to be an energy (calorie) deficit of around 3000 kcal. This means that if each day there is a gap (difference) of 500 kcal between energy consumed in foods and drinks and energy burnt up then 0.5 kg (1 lb) will be lost each week. To lose 1 kg (2 lb) per week there has to be a gap of 1000 kcal each day. In terms of food, 1000 kcal translates to around 3 rounds of sandwiches or 15 digestive biscuits or a typical roast dinner and pudding. The problem with losing weight for a Turner woman is that a shorter woman will have to eat fewer calories than a taller woman to achieve the gap in calories required to lose weight.
You may have been put off sport at school, but physical activity and non-competitive exercise is important for both weight control and bone-health. Activity also helps to lower the blood sugar level in diabetes. But… you do not have to rush out and start playing squash, hockey or polo or running 50 miles a week! Regular exercise at least 3 times each week for 30-60 minutes is the aim. Brisk walking, swimming and cycling are excellent: the aim is to raise the pulse to between 60-70% of maximum for most of the exercise. 60% of maximum is the level suggested for those beginning an exercise programme, 70% is more suitable for those already in a fitness programme. Maximum heart rate can be estimated by subtracting your age from 220. So a 30 year old woman would have a maximum heart rate of 190 beats per minute and should aim for a heart rate (pulse) of 115 per minute when exercising. Remember to start gently, warm up and warm down (ie increase and decrease heart rate steadily). If you have any particular health problems check with your doctor before beginning an exercise regime. Otherwise, if you haven't been active for some time - start gently and build up slowly: try 15 minutes of moderate activity twice a day to start with and build up to half an hour in one go. Choose activities you enjoy - you are less likely to give up!
The type of diabetes that most often occurs in Turner women comes on later in life. Diabetes occurs when there is a reduced amount of insulin present - insulin is the substance which regulates the blood sugar level. When there is excess fat in the body insulin does not work so well - there is reduced insulin sensitivity. Exercise and weight loss increase insulin sensitivity enabling the insulin which is made to work better.
Bone contains a number of minerals of which calcium is the most abundant. Bone is constantly being remodelled - broken down and remade. In childhood and up until the age of around 30, the density of bone is increasing, after this bone density is fairly steady until the age of the menopause, after which when it falls gradually. In osteoporosis, bone is broken down too fast. A diet lacking in calcium may worsen this problem. A diet rich in minerals and vitamins is the best choice for healthy bones. More is not always better though – the body is only able to absorb a certain amount of calcium from the gut, so it is not usually necessary to take large doses of supplementary calcium. Bone loss may be worsened by smoking, taking large quantities of alcohol, caffeine, and salt. Regular weight bearing exercise will help keep bones healthy.
Hormone replacement therapy (HRT) can occasionally cause an increase in weight but it is nearly always possible to find a suitable preparation with medical advice. For instance, some women find it easier to lose weight when using oestrogen patches rather than HRT tablets. HRT will affect the distribution of fat on the body, causing less to be deposited around the abdomen (tummy) and more on the hips and bust - a change from the 'apple' shape to the 'pear' shape. This change in shape is healthy for women.
A healthy diet should be low in sugar and fat, but high in fibre. Fortunately, the types of food which are rich in nutrients tend to be low in sugar, and many are in fat. So it is possible to eat meals which are good for weight and bones but keep blood sugar levels stable. Eat plenty of these healthy foods fresh vegetables, fruit, salad, fish, chicken, bread, potatoes, pasta, rice, low fat dairy products, beans & lentils. Fluid intake should be between 1.5 and 3 litres daily. Here is an example of a healthy diet:
BREAKFAST
Fruit or small glass fruit juice AND Wholegrain cereal with low fat milk OR 1-2 slices bread with small amount spreads Tea or coffee with low fat milkMID-MORNING
Tea or Coffee/low sugar drink/water Fruit if wantedLUNCH
Portion lean meat/fish/eggs/cheese/ pulses (beans & lentils) 2-4 slices bread OR portion potato/ rice/ pasta
Large portion vegetables/salad vegetables Fruit or yoghurtAFTERNOON
Tea or coffee/low sugar drink/water
Fruit or 2 plain biscuits if wantedEVENING MEAL
same as lunchBEDTIME
Milky drink made with low fat milk
If the meal pattern above is used for everyday eating, a portion of cake, chocolate or crisps may be included from time to time. It is the day to day pattern that is important, not the (occasional!) celebration!
Eating disorders such as anorexia nervosa and bulimia nervosa are common in all young women, including those with Turner's syndrome. There is no foolproof way of avoiding eating disorders, but there ARE ways of reducing the risk of developing one. Magazines, TV and other people all talk about the way we SHOULD look - but many of these images are not realistic. It is better to be as healthy as you can - both physically and mentally - than strive to be the shape of a size 6 model (who may herself have an eating disorder!). Work on eating healthily - but don't let diet rule your life. If you find yourself focussing too much on your weight, shape or food intake, ask for help from your GP, specialist, or contact the Eating Disorder's Association for further information (your library or phone book will have phone numbers).
Dr Gerard Conway, Consultant Endocrinologist
The Adult Turner Clinic, The Middlesex Hospital, Mortimer Street,
London W1N 8AA
“Talking About Turner Syndrome” – the video Copies are available from the TSSS office - on loan for £2 [or stamps to equivalent] or own your own copy for a donation of £5
(Ed’s Note: - the following guidance note on the new tax credits is reproduced with permission from ‘Contact A Family’. A further guidance note on this topic namely ‘Tax Credits - One Year On’ will be published in a future edition of ASPECTS).
In April 2003 the government introduced two new tax credits to help families with children and people in work - Child Tax Credit and Working Tax Credit. These new credits allow the Inland Revenue to assist more people than ever before, with 9 out of 10 families being eligible for some help. Initially parents getting Income Support have been able to choose whether to claim Child Tax Credit or not. However the government’s intention is that all claimants will eventually be transferred onto the Child Tax Credit. This article looks at how payment of the Child Tax Credit will affect parents currently receiving Income Support. Similar rules will also apply to families claiming income based Job Seekers Allowance.
Child Tax Credit is a means tested benefit that can be claimed by anyone with a dependant child. You can apply regardless of whether you work or not and it is paid in addition to Child Benefit. The amount of child tax credit you receive depends on your personal circumstances, including the number of children. An extra amount is added to your tax credit calculation for each child who gets Disability Living Allowance (DLA) or who is registered blind. If your child gets the high rate DLA care component a further amount is also added.
From April 2004 onwards CTC is set to replace all Income Support payments for children. Anybody making a new claim for Income Support only gets amounts for themselves and any partner, with a separate CTC claim required for children. Between April 2004-05 all existing Income Support claimants will also have the amounts they receive for children replaced by a CTC award. Some parents will continue to receive a reduced amount of Income Support, but for others it may stop altogether.
Parents on Income Support will automatically be awarded CTC. This will happen during the course of this year on an area by area basis. Some parents may be better off claiming CTC now, rather than waiting to be transferred.
Example
Miss Green has a 12 year old daughter who is disabled and in receipt of DLA middle rate care component. She receives Child Benefit of £16.50 per week, Carers Allowance of £44.35 per week, and Income Support of £121.06 per week. This is a total of £181.91.
At some point during the year April 2004-05, Miss Green will start to be paid £84.21 Child Tax Credit per week. She will continue to get Child Benefit and Carer’s Allowance as before. However her Income Support award will come down to £36.85 per week, as it will no longer include any amounts for children.
Her total weekly income will continue to be £181.91.
This is because the treatment of some types of income (e.g. child maintenance or most student income) is more generous under CTC than Income Support. Whether you will be any better off claiming now will depend on your particular circumstances and you should seek advice (see below) about how a CTC award will affect your existing benefits.
If you stop receiving Income Support you will have to reapply for Housing Benefit and Council Tax Benefit. The amount of any new rebates will depend on your income (including the CTC payment). You should still qualify for help with NHS costs and free school meals so long as your income remains below certain annual amounts. However you will no longer be able to apply for community care grants or budgeting loans from the Social Fund. Contact a Family employ a welfare rights specialist who can provide advice on any aspect of Tax Credits. Please call the Contact a Family freephone helpline on 0808 808 3555 (weekdays 10am-4pm) or e-mail mailto:helpline@cafamily.org.uk
(Ed’s Note : TSSS are again indebted to Elsa Tessadri a Learning & Development Officer in the Department for Work & Pensions for being able to publish an important DWP factsheet which will be of benefit to our members. The factsheet concerns ‘Carer’s Allowance’ and is printed below).
Carer’s Allowance (CA) is a taxable benefit for people over the age of 16 who spend at least 35 hours a week looking after someone in receipt of Disability Living Allowance, (middle or highest rate care component), Attendance Allowance or Constant Attendance Allowance (at or above normal rate).
Adults (over 16) who care for a relative or friend for at least 35 hours a week. The person you are caring for must be in receipt of one of the benefits mentioned above.
If you are in Full Time Education (21 hours a week or more) CA will not be payable
If you earn more than £79 a week, (net, after allowable expenses) CA will not be payable.
CA will be in payment as long as your circumstances remain unchanged. You must report any change in circumstances immediately.
You must not earn (after allowable expenses) more that £79 a week
Savings are not taken into account for CA purposes.
If you are claiming certain benefits (such as Income Support or Jobseekers Allowance Income Based), these benefits may increase or decrease.
You will need to complete claim form DS700.
You can obtain the form by contacting your local Jobcentre Plus or Social Security Office.
Alternatively, you can download and complete the form on-line (see “How Can I Find Out More” for details).
CA is normally paid direct into a Bank, Building Society or Post Office account either weekly or every 4 weeks.
You may need to attend an interview at your local Jobcentre if you live in a Jobcentre Plus area.
There may be other benefits or premiums you may be entitled to, depending on your circumstances. Please check the website or contact your local Jobcentre or Social Security Office.
You can contact your local Jobcentre Plus or Social Security Office (leaflet SD4).
Visit the DWP website at www.dwp.gov.uk
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