Ever wanted to hear how other people like you cope with their severe allergy? Check out these stories below…
Opening a bag of nuts is an everyday event but not for me….
Today I would like to talk to you about the terrifying experience I have when my body goes into anaphylactic shock from eating nuts or sesame seeds.
I was first diagnosed when I was three years old and although it was a long time ago I still have vivid memories of eating Nutella and then the feeling of my throat and lips itching. My mum says that it was very frightening and this day changed my life forever.
Unfortunately I have recently experienced a serve reaction to sesames seeds, after eating a cereal bar in my cookery lesson.
The roof of my mouth started to itch and I knew that I had to get to my bag to take some Piriton. I was frightened. Once I had found my epi-pen and Piriton I ran back into class. Before I even got the lid off the bottle, I started being sick into the bin next to me. My throat felt like it had a lump in it and the roof of my mouth was pulsating. After I had stopped vomiting the cookery assistant led me to the medical centre. First he gave me Priton but I vomited this up, he then told me I needed to swallow a tablet otherwise I would have to use my epi-pen. Fortunately I did manage to swallow the tablet and I sat in the recovery centre to wait for my mum. As I sat there I was frothing from my mouth and had to keep spitting out my saliva. My hands were a strange blue colour and very cold. My stomach felt painful and my lips were sore. When my mum arrived she was very red in the face and looked very scared. I was so pleased to see her.
Mrs Davey told my mum to take me straight to A&E and if my condition deteriorated she was to administer the Epipen. On arriving at the hospital I was taken straight into triage where a nurse checked me over.
We had to stay at the hospital for 4 hours as a precaution in case I had a second reaction when the food I had eaten hit my stomach. Fortunately this did not happen but I was told by the doctor that I should from now on administer the Epipen straight away.
Living with an allergy can be very difficult at times. I have to take responsibility for a condition that can be life threatening.
“Becoming older I have taken more responsibility for my allergies…This year I visited Cuba with my family for two weeks and experienced Cuban life and culture whilst safely managing my allergies!”
“Having discovered my multiple allergies from a very young age, I grew up knowing that I was unable to eat eggs, dairy, shellfish and all nuts. My parents would be very careful with the food I was eating and making my friends parents aware of my allergy when I was younger.
I have only suffered the one anaphylactic reaction, which was when I was about 3 to eggs and since then, partly due to being careful and reading ingredients I have only had two small reactions since, but did not require my EpiPen.
Becoming older I have taken more responsibility for my allergies. When I was younger my parents had to help me but when I became a teenager, I attended an anaphylaxis allergy youth work shop. I met other people my age who also had allergies and this workshop gave me confidence and guided me to how I could be responsible for my own allergies which I now successfully do.
This Easter, I was tested again for my allergies and my dairy allergy had decreased. It was low enough to have a controlled “food challenge” so I spent a day in hospital, being given controlled amounts of milk, increasing the amount over a period of time. Growing out of my dairy allergy has changed my life, a whole new world of food is awaiting me and I’m still discovering new products I’m yet to try.
Travelling has never restricted our family holidays, our annual break abroad to exotic locations are always memorable experiences. I would take travel translation cards and use them when eating in restaurants and I have never had a reaction abroad. This year I visited Cuba with my family for two weeks, and experienced Cuban life and culture whilst safely managing my allergies.”
After making the decision to travel before university, Stephen now writes regular guest blog entries for us about his experiences travelling the world with his allergies. You can read Stephen’s entries and much more content for young people with allergies at our blog Outthere.
I found out I had a severe nut allergy in 2006. I had gone shopping with my mum and I had bought myself a prawn curry. I can remember having a small painful lump on my tongue as soon as I had a mouthful. What followed next was absolutely terrifying, from feeling a sense of impending doom to swelling of my face and throat. This happened very quickly and I was lucky that the paramedics arrived within 5 minutes. Because of this experience, I became much more interested in food and so I had decided to train to become a Dietitian. As scary as the reaction was, in some ways I am pleased this happened to me because it sparked a new interest and I would eventually love to specialise in allergies.
As part of my degree, I undertook a placement at Anaphylaxis Campaign HQ and gained some practical insight into their work, which has been really helpful. I would encourage any other young people with an interest in allergy to look in to volunteering or working with them.
When I decided I wanted to become a Dietitian, I had to move to University far from home. Naturally, I was a bit nervous of house sharing and the risk of cross contamination. Thankfully, I have not experienced another anaphylactic shock since 2006. I have also met a lot of other students at University who also have food allergies. I realised that I was not alone and that in fact it affects a lot more people than I had thought.
I would advise people with severe allergies to always carry adrenaline and always read the ingredient lists, even if its something you eat often. Most importantly, don’t be afraid of living with an allergy. If you are planning moving away to University, tell your housemates about your allergy (just in case of a very unfortunate incident) and they will know what to do. Also, try to keep your kitchen clean! If you ever need support, the Anaphylaxis Campaign are here to help.
“I’ve never let my allergy hold me back when enjoying myself or doing what I love, like going travelling and going to festivals.”
“I live in Brighton and I have been a severe nut allergy sufferer my whole life.
When I was younger my allergy was never much of an issue because I wasn’t in control of my own food. However, when I became a teenager, I starting buying snacks for myself and eating without my parents, so it started to become more of an issue to deal with. Asking the waiter at a restaurant whether your food has any nuts or nut traces can be a bit embarrassing if you’re with a big group of friends, but luckily my friends were always there to support me and often asked for me if I was too embarrassed!
Good friends have been the most important thing in my life in terms of being able to handle my allergy. They always support me and have done ever since those nervous first few days of school.
As I got a bit older and started getting into relationships, the embarrassment came back when going out on dates, but if you pick a nice enough girl or guy then they should be understanding enough to support you (like mine was!).
I’ve never let my allergy hold me back when enjoying myself or doing what I love, like going travelling and going to festivals. They don’t have to be tricky situations as long as you’re with people that understand and don’t take TOO many risks!”
“Since becoming a teenager I have started over analysing food and was starting to think that every food I ate I could be allergic to. I have now started to make changes, and I am continuously finding new foods that are suitable for me.”
“I found out I was allergic to peanuts when I was five. I had eaten a raisin which had been in the same container as a peanut. I became faint and drowsy and had to be rushed to hospital. After lots of testing I was diagnosed with a peanut allergy.
Since I was diagnosed I have had to be extremely careful with what I eat. My family were very good at dealing with my peanut allergy when I was young and thankfully I haven’t suffered from a severe reaction since.
Since becoming a teenager I have started over analysing food and was starting to think that every food I ate I could be allergic to. I have now started to make changes, and I am continuously finding new foods that are suitable for me.
I won’t let my peanut allergy rule my life, You have to take everything step by step. I can still do things that every other teenager does.
Don’t be ashamed about telling people about your allergies, you’re never on your own!”
“The reaction started while I was eating my curry…My parents made a quick decision to take me to the hospital but I never made it…”
“I am a typical teenager living with a life threatening allergy. Over 11 years I have experienced two anaphylactic shocks. One when I was three and one in 2011.
The one in 2011 started when my family got back from our Easter holiday in Devon. Because we wanted an “easy” meal after the long journey back, we decided to get a takeout curry.
The reactions started while I was eating my curry. To start off with I felt an unusual felling in my mouth which I thought was the start of a tooth ache. But it wasn’t! It was the start of my peanut allergy reaction. After the tooth ache I suddenly felt really tired, so I went to lie down. I then started to cough and wheeze quite dramatically. My parents made a quick decision to take me to the hospital. I never made it to the hospital because my allergy got so bad my mum had to stick my adrenaline auto injector into my thigh while my dad called the ambulance.
I am ok now but I’ll always be aware of the dangers in take away shops and elsewhere!”
“Most of my friends have been very supportive…of course there’s been the odd joke here and there…My advice to anyone who is experiencing bullying would be to believe me when I say it feels so much better when it has been sorted out.”
“I’m 14 years old and I’m allergic to peanuts. Allergies can make your life really difficult and it means you have to be very careful wherever you go. There have been times at restaurants where I have had to just get a drink because the risk was too high. Other things surprise lots of people — like that I’ve never had a Chinese takeaway before!
Most of my friends have been very supportive and while of course there’s been the odd joke here and there, they were especially supportive when I first got my EpiPen! They were also very understanding, when I told them about how to use the EpiPen. They were very excited about the practise one…Someone even went home and bought one from eBay!
I have had a few difficulties. Even though my school is ‘nut free’ it does not stop people from bringing in peanuts. Some have been waved in front of my face, this was really scary and I brought up the courage to tell my form tutor, who luckily sorted it out. My advice to anyone who is experiencing this kind of bullying would be to believe me when I say it feels so much better when it has been sorted out and you feel safe!
I fundraised for the Anaphylaxis Campaign and collected £30 worth of coppers, with even some of my teachers donating!
I have had some moments where I have panicked because I have realised that I did not have my EpiPen with me but I have got better and I have learnt how important it is and that I need to carry it everywhere. I have also found some very useful information on the young person section so thanks Anaphylaxis Campaign! Oh and I also have a ‘Medicalert’ bracelet which is really cute and I wear it wherever I go…I recommend them to everyone!”
“My ambition now is to go to university next year. I have a few career choices in mind, a lot of them centring around children.”
“My name is Nicole and I am nineteen years old. Those who look at me see me as a normal teenager: happy go lucky, enjoys shopping, going out, goes to school, loves partying and is a genuine girly girl. Since the age of fifteen I have been diagnosed with asthma and anaphylaxis. Both of these are life-threatening, life-altering conditions which can be hard to cope with on a daily basis.
I have had to learn to read food labels carefully, because it’s not just things like nuts that I am allergic to. I am allergic to really weird and wonderous things such as: ginger, maple syrup and pears and others!
My ambition now is to go to university next year. I have a few career choices in mind, a lot of them centering around children.”
“Expect the unexpected and always be prepared!”
“My name is Nathaniel, but my friends call me Nat. I’m 16 years old and am currently at college studying for my A levels. I am allergic to all seafood, nuts, sesame seeds and lentils. In the past, my schools have been very conscious of my allergies and have protected me to an extent. I found out I had allergies when I was very young and haven’t had many any bad incidents in school, but growing up with allergies has made me aware of what I’m eating and I’ve learnt to cope with them.
I’m not very extroverted and that means that a lot of people, other than my closest friends, have no idea I have allergies. There have been a few times where people have jokingly tried to make me eat seafood, but they often haven’t understood there seriousness of my allergy. If anyone ever tries to do something like this to you and you feel like you are in serious danger, I’d advise getting out of the situation as fast as possible and then explaining the consequences. Fortunately, I’ve never been bullied because of my allergies. This could be down to my quiet nature, but frankly I don’t see why people would bully someone just because they can’t eat certain foods.
I’m lucky to have travelled and had many amazing experiences all round the world. Largely due to my parents, I have stayed out of trouble in other countries, but I always carry a card stating my allergies in the local language and of course, my adrenaline is constantly with me.
I’ve always felt a bit self-conscious and annoyed at having to carry my adrenaline around everywhere. Sometimes, there really isn’t anywhere convenient to put it when you don’t have a bag, but it’s so necessary for your safety. You just have to rise above it and just carry it around everywhere no matter what.
In the past, I’ve had lots of problems with restaurants and eating out, so I find asking the waiter immediately about the food and whether they can double check with the chef is a good idea. Another life-saving (literally!) thing I’ve done on many occasions is to stop and physically look at the food before I touch it and ask the waiter about anything on the plate that I don’t recognise. This has been one of my most effective methods to date.
I’ve learnt to expect the unexpected. Once, when skiing in the French Alps with my school, we decided to stop on a plateau half way down a mountain for some refreshment. I was handed a sandwich but little did I know, the sandwich contained mayonnaise. With the first bite of that sandwich, my lips started swelling up and my throat became tight. I told the group leader and was escorted to the bottom of the mountain to be treated. So, my advice is don’t eat anything you haven’t prepared yourself half way up a mountain in France!
Expect the unexpected and always be prepared!”
Every job teaches you something you didn’t know, whether that’s about the world, about the sector, or about yourself. For instance, working in retail is possibly one of the most underestimated jobs; those people have the patience of saints. Fast food is much less appealing once you’ve worked with it (this has its pros and cons). And, if you’ve ever had a newspaper round you’ll have learnt, more people notice the absence of their newspaper than expected; skipping the middle man between a newspapers delivery and its recycling is apparently not appreciated.
However, working with The Anaphylaxis Campaign has taught me lessons I not only didn’t know I didn’t know, but lessons I didn’t know we all should know.
Looking back to before this job I was totally ignorant to what having an allergy is really like and how serious they are. I know so far I’ve only uncovered the tip of an iceberg but I’ve learnt so much already. In fact, working with The Anaphylaxis Campaign has even opened my eyes to both the danger I put people I know with allergies in and the danger I put myself in, having an allergy to raw tomato seeds.
“The most important lesson here is the work The Anaphylaxis Campaign is doing is so crucial. There is not enough awareness or information about allergy and this can lead to many naÃ¯ve mistakes, and sometimes these can be deadly.”
Two particular instances have stuck out and, from what I have learnt here, made me think differently.
The first; the danger I put an old boyfriend in regularly during the time I was with him. He has a severe nut allergy, which I had known about but never took as seriously as I now know I should have. One day my recklessness turned nasty after having eaten nuts and given him a peck on the lips. Despite him explaining my mistake, that the nuts I had eaten left residue in my mouth and saliva and thus gave him a reaction, I continued to make other similar, stupid mistakes that put him at risk. I was ignorant and didn’t know better because the education and awareness about allergies is too limited. Who knew kissing could be a problem?
The second; the danger I put myself in. Since I was young I’ve been intolerant to raw tomato seeds. It took a while to figure out, which I now realise shouldn’t have been the case, but even once I did I was barely any more cautious. I never thought it was a big deal. In fact, I regularly ate things I knew had tomato in. Sometimes I was lucky and there were no seeds, others I wasn’t so lucky.
The worst of these times was during a picnic with my housemate to celebrate the end of our first year at University. I bought a chicken salad sandwich and, as usual, chucked the tomatoes out. I took a bite of the sandwich and decided I suddenly felt too sick to eat and threw it away. We then went for a walk, getting slowly further and further from the house. As we walked the queasiness got worse, and on top of that my lips were beginning to tingle and my throat felt funny, until suddenly I couldn’t breathe. I was having a reaction to the tomato, worse than I had ever had before. Understandably, we panicked. Deciding it was best to get home quickly we ran back to our house, a good fifteen minutes away.
I now realise what I did that day was so stupid. Not only did I put myself at risk by eating a sandwich I knew full well had tomato in but I also did physical exercise after, which could have made my reaction even worse and I didn’t even consider I might need medical attention because I just didn’t realise it was serious. By some miracle I was okay, but I now know how lucky I really was. I now also recognise my intolerance may not be just an intolerance and am asking my doctor for an adrenaline auto-injector (AAI). I also now feel confident to ask for one, because I know the facts and I know what support I should get. All because of this job.
However, working with The Anaphylaxis Campaign has not only taught me a great deal about allergy but is a wonderful place to work. I have only just left University, in fact the day I got the job was the same day as my graduation, and to step into a job that not only is relevant to my degree but is filled with people who are really working together and towards helping others is a privilege many students don’t get these days, especially in their first few months out of Uni.
If you want to tell your allergy story too, send me an email, we are always looking for people to share their experiences.
Find out more about the Anaphylaxis Campaign’s workshops for families and young people here.