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Sweet and sour

Life for young diabetics is difficult enough without the humiliation and frustrations inflicted by insensitive teachers. David Newnham reports on one teenager's campaign to educate school staff

If there's one thing 16-year-old Emma Steven-Jones doesn't care for, it's being made to feel different in front of her classmates. And embarrassment, like the endless round of blood and needles, is one of the drawbacks of being a teenage diabetic.

Take the condition commonly known as a "hypo". Because the pancreas fails to produce enough insulin to control the amount of sugar in their blood, diabetics have to regulate it themselves. It's a juggling act, involving blood tests, injections, and the careful timing of all meals and snacks. If you get it wrong, blood-sugar levels can go dangerously awry.

High blood sugar causes hyperglycaemia, which, untreated, can send diabetics into a coma. Too little sugar brings on an attack of hypoglycaemia, the "hypo" that Emma has come to dread in the classroom.

"It's well known," she says, "that diabetics get into trouble just before lunch, when their blood sugar level is running low." And although an untreated hypo can lead to coma - to irreversible brain damage, even - she is not talking about "trouble" in the medical but in the social sense.

The principal symptoms of a hypo include hunger, dizziness, confusion and double vision. But a sufferer can also become irrational and aggressive, so the state is often mistaken for drunkenness. Emma sums it up succinctly:

"You get really, really ratty." And getting ratty in class is not an ideal strategy for an AS-level student hoping to go on to university and a career in human resources management.

It is six years since Emma was diagnosed as diabetic. She was 10 when she became ill, and the hospital immediately put her on a strict regime of regular injections and food. She now gives herself four fast-acting injections a day using a device called a NovoPen. She also tests her own blood twice a day.

But the needles, she says, are no longer a problem. Rather, it is the humiliation and frustration she suffers when teachers fail to recognise what's going on. And so angry is she about the plight of diabetic children - particularly those younger than herself - that she has overcome her fear of embarrassment to mount a national campaign to raise awareness in schools of the condition. "Not only is this ruining my life and the lives of others, but it is also unacceptable," she says. "And this is the year I want to put it right."

Her anger is based on unpleasant experiences for which she blames the ignorance of a minority of teachers. Once, at a previous school, she was kept back from lunch for half an hour by a teacher who thought she was being rude. "It was a vicious circle," she says. "And everybody I have met on holidays run by Diabetes UK says this has happened to them."

Another time, she was having a bad hypo after PE (exercise, as well as stress, can bring it on). "My friend got me something to eat. I had just started eating it when a teacher from another class started shouting at me to stop. I said I was diabetic and she told me not to answer back. We ended up in the head's office."

Emma is now in the sixth form at Sir John Leman school in Beccles, Suffolk - which she describes as "no worse than any others" in terms of diabetes awareness, and where she depends on a network of friends to look out for her. She says the office staff are particularly supportive, and she has been helped and encouraged by a teacher who is also diabetic.

But she worries that younger children with diabetes may lack the courage to speak up for themselves in class, particularly over the need to eat a sugary snack to increase their blood sugar levels. The urgent need to snack is a central issue for diabetic schoolchildren, she says. "The embarrassment of having to eat when others don't makes it worse. The problem is that people with asthma, say, have medicine to sort it out, whereas I have to sit there and eat a Mars bar. Other people make comments, and I've been sent out of the classroom to eat it, which makes me look stupid."

Not only is it embarrassing to be sent out, but it could also be dangerous. In its information sheet for schools, Diabetes UK, formerly the British Diabetic Association, urges heads to "make sure that staff know the importance of not sending the child out of the classroom or anywhere alone to treat hypoglycaemia".

Emma acknowledges that such information is readily available, but says her experiences show that the message doesn't always get through, particularly in the case of supply teachers. What's needed, she says, is for a short, sharp leaflet to be distributed nationally to raise awareness of diabetes. "Who's going to read a 13-page information pack?" she asks. "Sometimes I dread to think what would happen if I fell unconscious."

While Emma is writing to her MP, Suffolk county council and the BBC - as well as some high-profile diabetics - to gather support for her national awareness campaign, another diabetic teenager, 16-year-old Tom White, is recovering from a two-year legal battle for the right to go on school trips.

Tom was shocked when Clitheroe royal grammar school banned him from a watersports trip to France and a GCSE exchange trip to Germany. "All I wanted," he said at the time, "was to be treated like everyone else, not to be made to feel different."

The school said staff were unwilling to assume responsibility for him after he had lost consciousness during his first hypo, and argued that the 1995 Disability Discrimination Act did not cover the education system.

In January, after the Disability Rights Commission took Preston county council to court, a judge ruled that the case could continue to the next stage, as the activity trip would not be seen as part of Tom's formal education. But the DRC was forced to give up on the German trip, because it was educational.

From September this year, under the Special Educational Needs and Disability Act 2001, schools and colleges will have a duty to avoid discriminating against disabled pupils. But Tom cannot be contacted to give a reaction to this belated good news. A DRC spokeswoman explains: "He is media blitzed out, and not happy to do interviews at the moment. He is sensitive about what his schoolfriends think. He has been fighting this case for two years, and it's starting to get to him in lots of ways."

That's certainly a feeling Emma Steven-Jones would sympathise with. "The other day, I had to have an injection and one of the boys was saying, 'Is she diabetic or something?' And I thought, 'Leave me alone. Go away'."

For a schools information pack and details of Emma's campaign, contact Diabetes UK,10 Queen Anne Street, London W1G 9LH, tel 020 7323 1531, or download it from www.diabetes.org.uk

Diabetes: the facts

* Around 17,500 children under 16, more than one in 700, have diabetes.

* Symptoms of undiagnosed diabetes include thirst, frequent trips to the toilet, weight loss and fatigue.

* Children with diagnosed diabetes will be treated with insulin injections and appropriate diet.

* In newly diagnosed cases, morning injections may take longer than expected, and the child may be late for school.

* Some children will need a lunchtime injection. But they should know how to do this without help.

* Most children with diabetes will need snacks between meals, perhaps eaten during class time.

* The need to eat on time means the child may need to be near the front of the dinner queue and at the same sitting each day. A delayed meal or snack could cause hypoglycaemia.

* Most hypoglycaemic attacks can be identified and treated without professional medical help.

* Symptoms of a "hypo" vary, but may include: hunger, sweating, drowsiness, pallor, glazed eyes, shaking, mood changes or lack of concentration.

* Fast-acting sugar should be given immediately. Examples are Lucozade, a sugary drink such as Coke or Fanta (but not diet drinks), a chocolate bar, fresh fruit juice, glucose tablets, honey or jam. The child's parents may supply Hypostop, a glucose gel that is rubbed on to the gums.

* Never send a child who is hypoglycaemic unaccompanied to get sugary food.

* At recovery, the child will need slower-acting starchy food (biscuits, milk, a sandwich).

* Recovery should take 10-15 minutes. Afterwards, the child may feel nauseous or tired or have a headache. If the child is having frequent hypos at school, you should inform the family.

Who is at risk?

Emma Steven-Jones has type 1 diabetes, the form that usually affects younger people, in which the pancreas has been damaged, possibly by an abnormal reaction to insulin-producing cells.

But type 2 diabetes, once found only in over-40s and children of Asians and African-Caribbeans, ethnic groups with a high risk of developing the disease, is now also being found in white teenagers. Research published last month confirmed the diagnosis of four white teenagers with type 2 diabetes in the UK. The four, the first cases confirmed in the UK (although type 2 diabetes in children is a problem in the United States), are all very overweight.

While type 2 diabetes has a genetic basis, increasing obesity and sedentary lifestyles are triggering a rapid rise in case numbers.

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