The Lisburn woman whose allergies are so severe she's a prisoner in her own home
Stephanie Bell talks to the former chef about her severe allergies and to a mum whose children face danger in foods
Published 18/11/2013 | 16:00
The world is a dangerous place for mum-of-three Dawn Leslie. Shopping, a trip to the hairdresser and even a visit to the hospital have all left the Lisburn woman fighting for her life. In fact the only place where Dawn is completely safe is in her own home.
At just 44-years-old, the mum of three grown-up children has had to give up her job as a chef and become a virtual prisoner at home in what is a drastic but necessary step to protect her health.
What are harmless everyday products to most of us are potentially lethal to Dawn who suffers from a long list of life-threatening allergies.
Trees, countless foods, virtually all cleaning products, latex and many antibiotics are among a frighteningly long roll of common items which could kill Dawn.
Air freshener is another real threat and breathing it in while in an airport more than a year ago – going on a trip to Liverpool with friends – led to a full scale emergency with Dawn being stretchered off an aeroplane into an ambulance, followed by four days in intensive care in Antrim Hospital.
"It was a trip away with girlfriends – you have to try to live your life as normal as possible – but I couldn't do it now," she says.
Dawn is one of a growing number of people – mainly children – who are developing allergies in what is being described by the medical world as a new epidemic.
Statistics for the whole of Ireland show that 108,000 children and 100,000 adults have been been diagnosed with a food allergy. UK hospital admissions for food allergies have increased by 500% since 1990.
It is an alarming trend as food allergy can kill through anaphylaxis. Dawn is one of the unfortunate ones and an extreme example of the impact of such allergies.
A few months ago while reaching for a product from a supermarket shelf for her mum she accidentally touched a latex dog toy and ended up in the high dependency unit at the Royal Victoria Hospital. And despite the extreme care she takes to protect herself, in the past 18 months alone she has been hospitalised 15 times with anaphylaxis shock.
Dawn – who is mum to Lee (24), Tanya (20) and Jay (16) – rarely leaves the house now as it is just too dangerous for her.
Two years ago she was forced to give up her career as an assistant chef because her condition had become so chronic.
"For as long as I can remember I've had different allergies, right back from childhood," she says.
"It's like the more you get, the lower your body's resistance becomes and so you get allergic to more and more things as time goes on. The list just keeps growing. My list is so long I couldn't tell you everything that is on it.
"The problem isn't just what you are allergic to but what you don't know you are allergic to or what you can become allergic to.
"I started to become anaphylaxis about 15 years ago and have to carry an epi pen with me at all times to inject myself if I have a reaction.
"Your body starts to shut down and you have about 20 minutes to get the medication or you can die.
"I've had about 10-15 anaphylaxis reactions in the last couple of years and so many in my life that I couldn't count them.
"I know now when it is coming on, as my blood pressure changes and I start to feel dizzy. I have to have someone with me at all times if I do go out. I know I am an extreme case and my consultant has told me that he has never seen as bad a case as mine. He also told me that the best thing for me is to stay in my own home. It's not safe for me to go out."
Dawn has had a tough time adapting to life at home and depends on her elderly parents to bring her to any appointments.
She cannot use public transport because of her condition yet has been turned down for a disability car. Her children are a huge support, as is her whole family, and a recent trip to her daughter's hairdressing salon also illustrated just how vulnerable Dawn is.
She says: "My daughter had cleaned the windows of the salon earlier that morning with Mr Muscle. Even though it was hours later, when I was sitting in the chair quite a distance from the windows, I started to feel really ill and my daughter knew straight away why."
Dawn feels there is little awareness and support for people with allergies, even though it is a fast-growing problem.
She pays tribute to Allergy NI for their help and laments the fact that the only local charity supporting people is constantly being turned down for grants.
She says: "From my own personal point of view, I just have to get on with it as I can't change it but I do feel there is very little support.
"People just don't understand. Even in hospitals the awareness is not great. I actually nearly died in hospital. I was on life-support and there was a sign on the door saying no latex because I am allergic to it.
"A nurse came in wearing white latex gloves and touched my arm and sent me in to shock.
"Also, because hospitals get their food from outside suppliers they cannot guarantee it is nut-free, so I can't eat it. Its crazy how little awareness there is here. In America they have allergy-free kitchens and restaurants and hotels and we have nothing here.
"Going out of the house is life-threatening for me, that's the reality of what I have to live with and giving up my job was really tough as I was never used to sitting at home.
"My father is 72 and I have to rely on him to bring me anywhere I need to go because I was turned down for the higher rate of DLA, which I just don't understand as I cannot use public transport. So even the government is not supportive."
'Orla tried on my lipstick, and her face immediately began to swell up'
When Siobhan King is doing the family's weekly grocery shop she doesn't have the luxury of simply picking whatever takes her fancy and tossing it in to her shopping trolley.
Every single label has to be carefully scrutinised in what has become a time-consuming chore for the mum-of-three, who has two small children with food allergies.
It is just one of the many precautions the family have to take every day to protect their little ones from contact with ingredients that could be potentially life-threatening.
Siobhan (45), an IT analyst, and husband Phelim (45), a warehouse manager, have three children – Orla (9), Cormac (7) and Dermot (3).
The couple were initially shattered when their first-born Orla was diagnosed with a nut allergy when she was just two.
Then when Dermot was five months old they were further devastated to discover he was allergic to dairy foods and eggs, as well as having an intolerance of wheat. While it has meant big changes for the family Siobhan is determined that her children will enjoy as normal a life as possible.
She recalls the shock of discovering her children had serious allergies: "I was making meat and veg for dinner one night and had a jar of sauce to pour in.
"I lifted Orla's meat and veg and just put a teaspoon of the sauce on her plate to taste it.
"Shortly after dinner she asked to go to bed and I thought nothing of it, I just through she must be really tired tonight.
"Usually we had a bedtime routine where she got a bottle of milk and a story but she didn't want any of it so I put her down and left her. The next thing I heard her screaming and I went in to her room and she was vomiting really heavily.
"She had welts all over her body and I immediately rang the out of hours doctor.
"When I was pregnant I didn't eat nuts as I have a history of asthma and was told it was important for me not to eat nuts during my pregnancy.
"That came in to my head and – call it mother's instinct – but I knew straight away and I ran downstairs and got the sauce jar and read it and it said there was 3% nut content."
The GP took Siobhan's concerns that her daughter had an allergic reaction to nuts on board and referred Orla for allergy testing to the Royal Victoria Hospital in Belfast. It was six months before she was seen and tested and another six weeks was spent anxiously waiting for the results.
"When we finally got the results it was very hard to accept," says Siobhan. "We had a child who had an allergy which was anaphylaxis. Thankfully she didn't go in to shock or collapse that night but that is now the fear we live with. Allergy NI was a great support to me and my family and we eventually got referred to the Allergy Clinic in the Ulster Hospital, where the staff has been a brilliant support ever since.
"Orla also has an allergy to sesame seeds. She has to carry a medical bag with an epi pen with her at all times. She just knows that it is medicine that will make her better if she takes a reaction. She doesn't know the reaction could kill her.
"We have to be careful. It takes me a long time to do my shopping as I have to read the food labels and we've changed our shopping and cooking habits."
School has been a great support in helping to protect Orla from exposure to nuts and for the family, eating out means speaking to chefs to ensure that Orla's food does not come in to contact with nuts or nut oil.
While the family has taken every precaution, risk is everywhere and this was recently brought home to Siobhan when enjoying a bit of girly fun with her daughter, allowing her to try on mum's expensive new lipstick.
Orla immediately suffered an allergic reaction.
Siobhan says: "Her wee lips and face started to swell and we had to give her medication. It turned out there was peanut oil in the base of the lipstick but all the ingredients were in Latin and you couldn't read it, even though it was a very expensive lipstick I had treated myself to."
Dermot's allergy manifested itself when he was five months old. Siobhan had been breastfeeding him up until then and had given him formula milk for the first time.
His face became very red and he developed hives, which immediately set alarm bells ringing for Siobhan.
She was able to ring the allergy clinic in the Ulster Hospital immediately and they prescribed a special milk formula.
She says: "Dermot reacts to touch. He was in nursery and a wee fella beside him coughed after drinking milk and some of it landed on Dermot and he swelled up. He hasn't taken an anaphylaxis attack yet and we don't know if he will. He has to get more tests done.
"It does mean that there are a lot of foods that he can't eat, including things like birthday cake.
"We have to be constantly careful but I just have to accept it and get on with it.
"I don't want the children to worry about it and I want them to have as normal a childhood as possible."
A 'growing epidemic' and the UK is now worst in world
Trevor Brown is a consultant paediatric allergist with 33 years of experience in treating children at the Northern Ireland Allergy Clinic in the Ulster Hospital, Dundonald.
In what he described as a worldwide epidemic, the UK is the worst country for numbers of people with food allergies, followed by New Zealand, Australia, Republic of Ireland and Canada.
Mr Brown, who is also a medical advisor for the main support groups for sufferers – Allergy NI and Allergy UK– says we are currently experiencing a second wave of allergies in the developed world.
Whereas 30 years ago eczema, hay fever and asthma were on the increase, today's generation is facing new reactions to food.
"It's a worldwide epidemic and UK has the highest number of cases," he adds. "I am seeing fathers and mothers who I treated for asthma and hay fever in the first wave of allergies now bringing their children in with food allergies.
"When something happens in a generation it is largely down to change in the environment but the fact that it's more common in some countries than others also points to a genetic link."
Allergy is an abnormal response by the immune system to harmless proteins. There are many theories as to why we are suddenly developing allergies to foods and one of the main schools of thought is because of our more hygienic environments.
He says: "We're a very sanitised society and while being hygienic has lots of merits one of the downsides is an epidemic of allergies. Our immune systems have less to fight so they are reacting against harmless proteins. There could also be a nutritional basis. Our diets have changed and we are eating less fresh foods which could be another reason."
Michael Walker, a former public analyst on the Board of The Food Standards Agency, is the facilitator for a new initiative by Safe Food to support people with allergies called the Food Allergy and Food Intolerance Network.
It is an electronic social network with over 370 members.