For advice on severe allergies, visit the Anaphylaxis Campaign website www.anaphylaxis.org.uk/living-with-anaphylaxis/young-people or drop us a line info@anaphylaxis.org.uk / 01252 542029 /@ACOutthere/@Anaphylaxiscoms

Wednesday, 30 November 2016

Meghan Gayler

Fifteen year old Meghan Gayler only discovered her allergy to peanuts last year after going into anaphylactic shock from eating a Chinese with friends. Here, she describes how it felt.

Most people find out they have an allergy in the first couple of years of their life, however I discovered mine last summer at the age of 15.

It began last summer during our end of Mock exam celebrations with friends. We had decided to order a Chinese to enjoy all together but it certainly wasn't enjoyable after a couple of minutes into the food. I decided to try Satay sauce as I had never tried it before and wanted to see if I’d like it.

I put a piece of Chicken covered in Satay sauce onto my plate and licked my finger as I got sauce on my finger. This was the first sign. My lips were tingling like mad and my throat and mouth were filled with an itching sensation that even water couldn't take away. I decided to carry on eating the food, but within an hour, full anaphylaxis had taken its toll. I was experiencing wheezing, hives, watery eyes, difficulty breathing and felt very anxious, something I had never experienced before. Soon after this, the breathing got worse and an ambulance was called. Nothing had ever happened like this before hence I had no EpiPen on hand. After 2 shots of adrenaline and a nebuliser helping with the breathing, the reaction finally calmed down.

After going through the awful experience of anaphylactic shock last year I have now discovered through allergy testing that I suffer from a severe allergy to peanuts that I had unbelievably coped with for 15 years. I now understand how serious allergies need to be taken as I’d hate for more people to go through the horrible experience of anaphylaxis. It has changed the life I live as going out to eat can feel as if the waiters think I’m being awkward but I’m certain it wouldn't be a pretty sight if they misunderstood. Even if I can't enjoy some of my favourite snacks anymore, better safe than sorry!

Jennie Marsden

Jennie Marsden describes her first allergic reaction and the difficulties she has faced as an allergy sufferer.

Lashings of smooth peanut butter upon buttered white bread used to be my favourite teatime treat, one that I regularly enjoyed until out of the blue, aged sixteen, I developed an allergy to all nuts and sesame seeds. My allergy was triggered by eating four cashew nuts and provoked swelling, hives, a drop in blood pressure and debilitating lethargy.

Twelve years later, my allergy has impacted many aspects of my life; learning to live on my own at University, eating out with friends and travelling abroad all proved tricky but not impossible; I have learnt not to risk Indian, Chinese and Thai restaurants, to check everything that I ingest or put on my skin. Checking ingredient lists, googling Latin translations and gently giving back nut filled gifts from my students. Nothing goes unchecked.

People presume that issues will only arise while ingesting something but shampoos, body creams and hair sprays often use nourishing but toxic nutty ingredients. Argan (Argania spinosa) has become the recent miracle oil and is now used in many mascara brands. I am still to find a lipstick that does not contain shea butter.

Visiting a foreign bathroom is now stressful and means sniffing the toilet roll to try and detect whether it has shea oil on it and then reading the ingredients of the soap bottle to check whether it’s safe. I recently bought a pair of nude tights to find that they had been infused with shea butter and have nearly drunk a can of cola with peanut oil in it. There is also a hazard in my job as a music teacher after I was informed by a piano tuner that he often uses walnut oil to condition the piano keys.

Social niceties pose problems too; I dread the kiss on the cheek greeting and then having to go through it all again when saying goodbye; kisses from family members who know about my allergy but forget that they have had a pesto sandwich for lunch then means an hour of worry when my cheek erupts in a nasty rash. I’m very lucky that my family are so understanding but it is exhausting having to remind people.

The hardest thing to come to terms with is the sense of ignorance that others have around you; a member of staff and an old ‘friend’ regularly roll her eyes at me if my allergy is mentioned; it really upsets me as I would like nothing better than to live allergy-free and not have to carry adrenaline; reactions like that make me feel embarrassed and anxious about my condition; careless and mocking attitudes will make taking risks more likely and it takes a lot of courage to stand up for yourself and appear ‘different’.

Unfortunately, I have been disappointed with the support available to me as an adult; reacting at 16 meant that I was not a priority and as a result of little support and a lack of reliable information, I suffered terribly with panic attacks and refused to eat out for many years. When enquiring about shea nuts, my GP told me to avoid them and yet other national bodies online have said that shea shouldn’t provoke a reaction; I had a negative blood test against coconut but was told by my GP that it wasn’t a reliable test so I should avoid it anyway and he couldn’t refer me to an allergy clinic ‘because they didn’t do that anymore.’

Twelve years on, I have learnt that only I can make life easier for myself; I took an aromatherapy course to learn more about cosmetic ingredients and now use essential oils to create my own toiletries and cosmetics. The fact that I can’t eat a lot of chocolate keeps me slim and my sugar levels down and because of my allergy; I am described as ‘special’ when I eat out. What more could a girl possibly want.

Friday, 29 July 2016

Amy Holland: Travelling with severe allergies

I am 23 years old and have had a severe allergy to peanuts and sesame all my life so have never known any different. I have always wanted to travel around Europe but always thought that going to new countries (without my mum!) would be too challenging. Although I have abroad many times before, I usually stick to resorts I know and ones where everyone can speak English! This year, I decided that I wanted to explore more cities in Europe and that by planning ahead maybe it wouldn't be as difficult as I had thought. I wanted to share my experiences of travelling around Europe as it might just give someone the confidence to travel to these places or there might be a little bit of it that would be useful in the future.

I travelled to Amsterdam, Prague, Barcelona and Lisbon, staying in mainly hotels and flying between each place. I was pleased with the airlines, where most made announcements and all refused to sell nuts on the flight. I always wipe down the areas around me on planes in case someone has eaten peanuts on the flight before. I look like a bit of a clean freak but the the tray tables never look very clean anyway!

Obviously I'm not a very adventurous eater but I don't really mind what I'm eating as long as I know it's safe and I've been fed! I felt quite nervous about eating while being away, especially in Prague, so I took loads of cereal bars and small boxes of cereals in the suitcase. It was definitely worth it even if I had to sacrifice a pair of shoes!! In two of our hotels, we had breakfast included. My initial plan was to use the allergy cards I'd brought with me but instead I smuggled a small box of cereal in to the breakfast room and had that! I knew it was safe and felt much better having that and some fruit rather than risking their food.

I can't give you a big list of restaurants as I stuck to 3 different places over the two weeks! I had emailed loads of restaurants before I went on my trip to ask whether they could cater for my allergy. Most didn't reply, some just sent the allergen menu to me and a few sent me detailed information of how they could change dishes to accommodate me. Hard Rock Cafe gave the best information and I ate there loads. I have eaten there before, and in each place they advised me on a burger without the bun which was really tasty. They were excellent with hand over notes when they changed shifts as I was also introduced to the next member of staff and the previous staff member explained the severity of my allergies to them. I had a Hard Rock Cafe in Amsterdam and Prague and honestly couldn't fault it and felt safe throughout the meal. I had also researched a place called CAU in Amsterdam who were also very good with allergies however I couldn't have much except a very fancy steak at lunchtime!

The other place I ate out at was McDonald's. I did ultimately become very bored of chicken nuggets but I wasn't really bothered as long as I ate! Obviously McDonald's were fab and although it's not very exciting, I'd much rather be safe. It was really reassuring to know there were so many McDonald's around as I knew I was safe there and that I wasn't going to die of hunger during the holiday!

Everyone I spoke to in restaurants had excellent English, I found in Barcelona there was the greatest language barrier so I stuck mainly to McDonald's while I was there. I also bought crisps and snacks for the day from supermarkets (there was a Tesco and M&S in Prague and an M&S in Amsterdam) and made sure to thoroughly check the ingredients! It was nice in M&S as although it was pricey, the ingredients were in English!

I know I said I'd write a quick message and it's actually been very long but I wanted to share my experiences. I would have loved to have this information before I went and hopefully some of it will be useful to you all.


I really enjoyed my experience there and never felt compromised by my allergies while I was away. Although my diet wasn't very exciting, all that I was bothered about was being safe and at least I could treat myself to the occasional cocktail!

Monday, 4 April 2016

Sinead Banfield: Travelphylaxis- My experience with travelling and Anaphylaxis


Feeling the freedom at Dune 45, Namibia

Anaphylaxis is a challenge, but life is an adventure! I have always enjoyed travelling
to different countries with family and friends. It was always Europe, United States
and Canada before the year 2014. You almost feel reassured in these countries due
to their food hygiene and allergy legislations. I was always extremely lucky to have
family and friends who understood and supported my severe allergies to nuts and
seafood.

I’m 24 and for as long as I can remember I’ve always been up for a challenge in life,
whether it’s skydiving, scuba diving or just going completely out of my comfort zone.

In December 2014 my friend asked me to travel to the Dominican Republic with her
as part of a backpacking holiday. This was a very exciting yet scary opportunity for
me as I had never been to a country where allergy awareness is significantly
reduced. It would also involve a range of activities around different parts of the
country where English was hardly spoken. I really wanted to go as who wouldn't
want to visit the Caribbean during their lives? I therefore did all the research prior to
our departure. My Mother helped me to set up allergy cards in Spanish explaining
my Anaphylaxis and what would happen if I ate these allergens. I ensured that the
catering staff in every restaurant was aware of my allergies including the hostels we
stayed in so they could locate my epi-pens in an emergency. The trip went really well
and I haven’t looked back since. In fact I am now addicted to visiting different
countries.

I always wanted to travel to Africa to volunteer. I never thought this would be
possible with my Anaphylaxis and the fact that the awareness of allergies is low.
However I reminded myself that there are always ways around these things. I
travelled around Africa, alone which is a challenge in itself. I managed to get hold of
an organization named Hostel Hoff in Moshi, Tanzania, where they could not have
been more helpful. I felt at ease straight away, explaining to the manager about my
allergies and how I carry adrenaline everywhere I go. I volunteered here for 5 weeks
and during that time they ensured that everyone was aware of my allergies and I
gave regular demonstrations of my epi-pen administration. The cooks at the
accommodation provided me with meals free of nuts and seafood and ensured that
my food was never cross-contaminated. They even informed the nuns of my
condition at the orphanage. They explained through Swahili where I volunteered and
were also very helpful. They managed to include me during mealtimes. I carried my
Swahili allergy cards everywhere and I was catered for very well the majority of the
time whilst eating out.

Following this volunteer programme I travelled through Zanzibar with my cousin.
Zanzibar was a tourist hub but some restaurants didn’t quite understand my
condition. The more you travel with an allergy, the more your 6th sense develops and
you can spot which restaurants actually understand. We managed to stick to very
good restaurants who understood very well thanks to the allergy cards I provided to
them.

Following Zanzibar I travelled through Zambia, Zimbabwe, Botswana, Namibia and
South Africa with Acacia Africa who were also fantastic at dealing with
dietary/allergy requirements. You can explain allergies to anyone, however,
translating your requirements into another language can be challenging.

Elephant Sands, Botswana
You can enjoy your travels but remain vigilant bearing in mind that you have a life-threatening condition. However don’t let your allergies hold you back from doing the things you love. Food allergies are extra work. This will involve being organized and ensuring you carry your epi-pens and anti-histamines everywhere you go and when I say everywhere I mean it. I would recommend the following travelling tips:

  • I carried 6 Epi-pens whilst travelling. I would recommend you keep 2 in your safe or at the volunteer/accommodation base and keep 4 handy in your bag with you at all times (2 for an emergency and 2 spare).
  • Wear your medic alert jewellery. It can save time in a medical emergency and get you the treatment you need faster.
  • Did you know that you can get a medicalert app on your phone? It comes up on your lock screen when installed so the finder can check your medical and contact details straight away.
  • Always check your airline allergy policy as each airline has their own and it can be open to change.
  • Make up allergy cards in the language of the country you intend to visit. This is actually very easy but be careful about translating online. The best way to get it translated is through native speakers. I am lucky to have lots of connections across the world however I have found embassies to be very supportive in helping me to translate information into other languages.
  •  Travelling with Anaphylaxis can be more expensive when declaring your condition with travel insurance however it is vital that you do declare it because you never know when an emergency will arise so it is best to be prepared. I would rather pay for an extra policy than end up in an unaffordable situation.
  • If you want to volunteer abroad in Africa remember this is possible. Yes it is a little more challenging with anaphylaxis but it is possible. I would recommend doing it through an organization that understands about food allergies. Hostel Hoff are good and you can check out their website (hostelhoff.com). I found Acacia travel to be a very good overland tour company. Travelling through an organization is so much fun and I have made lots of friends across the globe.
  • Make sure your peers and catering staff understand your condition and never be afraid to be assertive when explaining about Anaphylaxis.
  • Most of all have fun whilst being vigilant with food allergies.


I hope this article will inspire my fellow Anaphylaxis sufferers to travel and have the
amazing experiences I did. We all have different challenges so if I can do it you can
too. One of my favourite quotes is "we don’t grow when things are easy, we grow
when we face challenges." I wish you all well and………….. Happy travelling!

Friday, 1 April 2016

Harriet Giffard-Tiney: My journey to anaphylaxis

It has only been three years or so since I discovered my allergy to nuts was, in fact, far more severe than I first thought. When I was younger, I avoided nuts (especially peanuts) on the basis that they made my throat itchy and uncomfortable.

After eventually reaching a point of confusion, curiosity and concern, I decided to take a trip to my GP to discover more about my issue. I was told (soon after describing my symptoms) that I had a severe nut allergy, and was instructed to go straight to the pharmacy to pick up my first Epi-Pen. Suddenly, what was once a minor annoyance in my life, seemed much bigger and much scarier than it ever did. Not only that, but my allergy appeared to have grown more severe since being a child. I felt scared and isolated.

Following trips to my local hospital to find out more about my specific allergy, it was concluded that I had anaphylaxis to peanuts. To say my life hasn’t changed since that point would be untrue. I have since grown much wiser and more alert with my surroundings when it comes to eating in public places, as well as checking the ingredients of everything I eat and drink at home.

Now it has been a few years since my initial diagnosis of anaphylaxis, I’ve learned to live life as freely and happily as anyone else. I’ve taken on the same challenges as all my other friends, and have adapted to my new university life. Knowing you’re not alone in (what feels like) the most isolating period of time, is very important. My doctors were keen to introduce me to the Anaphylaxis Campaign and all the great work they do, to help me feel happier and more comfortable in daily life.

For anyone who has been recently diagnosed with anaphylaxis, don’t feel as though you’re alone or support isn’t available for you. There are so many others in a similar position that just want to discuss their concerns with others who understand how they feel.


I’m always happy to talk to others who have experienced a similar journey to me, and if you’d like to share your story with me, please drop me an email for a chat, at harrietgiffardtiney@gmail.com

Wednesday, 30 March 2016

Amie Bedford

Fourteen year old Amie Bedford describes the terrifying moment she started going into Anaphylactic Shock after tasting rocky road.

I was making a rocky road in school. I had been shopping the previous night for ingredients. The ingredient list said to get Brazil nuts, but as I couldn't find any, I got cashew nuts. I had finished my rocky road and me and my friend decided to taste some. Immediately, my throat started to really hurt very quickly and I could feel my throat starting to close. My parents were called to school and shortly after, I was violently sick. I was having a panic attack and felt a sense of impending doom. I was taken home where I was violently sick again.
Soon after, my mum took me to A&E at Bournemouth Hospital. On the way my face started to swell, my eyelids went white and bumpy, my lips went swollen and purple and I had generalised facial swelling. I have asthma so that made my chest a lot worse. At the hospital I was taken straight in to recuss. My blood pressure, pulse and oxygen levels dropped very low. After having oxygen, a nebuliser and lots of medicine through a cannula, I started to feel a lot better. I couldn't thank the nurses and doctors at Bournemouth enough.

Living with a nut allergy and any other allergy can be extremely hard; asking what's in your food all the time can be quite embarrassing! After having allergy testing, I found out I was allergic to cashews, pistachios and peanuts but I have been told to avoid all nuts as it could change. However, with Epipens and avoiding the allergen, anaphylaxis can be handled. I found out I was allergic on the 18th of December 2013 and I haven't had an anaphylactic reaction since!

Teenager transforms allergy community with innovative new Allergy Me apps

Adam Foot, 16, is the mastermind behind Allergy Me, a line of apps which are designed to help allergy sufferers.
Adam has suffered from a peanut allergy all his life, having been diagnosed at three years old. He recently undertook the BOPI (Boiled Oral Peanut Immunotherapy) research trial at St Mary’s Hospital in London. Unfortunately, Adam was unsuccessful in getting through because he reacted too much to the small doses of boiled peanut being administered. This disappointment spurred him on to look for ways he could help other people with allergies.
Allergy Me: Medical ID and Allergy Me: Translate were born from this. Allergy Me: Medical ID allows the user to enter personal data and information such as: allergies, the severity of the allergy, the reaction signs to look for and emergency contacts. The information can be accessed whether the phone is locked or unlocked, meaning anyone could access your information in an emergency situation. An alarm feature is also enabled so that people nearby are alerted if you are having an allergic reaction; it then explains how to help.
Adam said, “Originally, I decided to make an app that showed just my allergies on my phone and Apple Watch but, I then decided that this app could benefit others. I had a quick look on the App Store and found that there were only Medical IDs on there that didn’t go into enough detail for what I wanted. So, I decided to make my app so that others suffering with allergies could benefit from it too.”
Allergy Me: Translate has been designed to make travelling abroad a breeze. The app translates simple phrases between English, French and Spanish so that people with allergies can communicate their needs more easily. The user can choose from a list of common translations and restaurant staff can reply with a response from the list.
Having started to learn computer programming at school using a programming language called Python, Adam soon found that to learn how to make iOS apps, he would first need to learn how to use a different programming language, Swift. Schools don’t provide this training, so Adam was on his own to learn how to use it. Using resources from home such as iTunes U and YouTube, he was able to build his confidence in programming and ultimately in building his apps.
When discussing the benefits of using these apps, Adam said, “I think that this would help benefit allergy sufferers as they would feel safer knowing that if they were to have an allergic reaction, then people around them would know what to do. By having the information on your phone or Apple Watch, people around you and paramedics are going to know what to do sooner, minimising the effects as much as possible. I have added an emergency alarm into the AllergyMe: Medical ID app as it will reassure people if they were having an allergic reaction on their own and required emergency attention from someone around them.”

Allergy Me: Medical ID and Allergy Me: Translate are now available on iPhone, iPad and Apple Watch, and Android.







Verity Powell

Twenty three year old Verity Powell, who has a severe nut allergy, shares her experiences.

Aged 13 (ish!) I had my first allergic reaction to a brazil nut in a chocolate box. Prior to this I had eaten lots of different nuts and never had a problem. Luckily, I was with my Nan at the time who knew exactly what was happening and gave me an antihistamine. After that, my habits didn't change and I ate what I wanted. 10 years on I am now 23 and it's fair to say the allergic reactions have become more frequent and it's not just Brazils anymore. With this I have become very anxious and wanted to write a blog post to reach out to anyone who feels the same. 
I think my anxiety has come from two main things. First, being scared to use an Epi-pen if I ever needed to as I hate needles and second, eating out. Last year when out in a restaurant I had explained to the waiter that I had a nut allergy and yet when the food came out it was actually sprinkled with almonds. It's the 'fear factor' and not being able to eat what you want... it affects your quality of life. So I decided to investigate and get all the facts so I could become more confident. I went to my GP and explained my difficulty and he referred me to an allergy clinic at a nearby hospital. I cannot recommend enough that anyone with allergies has a skin prick test. As you can see in the picture, my
reactions were severe but I was able to learn the exact nuts I am allergic to and surprisingly, ones that I am not. It was quick and easy and they wait for 15 minutes and then measure the lump to see how severe the allergy is. The worst reaction was to Brazils (number 8) where the lump that came out was 12mm.

Not only this, but the consultant answered all my questions and I learnt how my eczema, hay fever and lots of different factors actually all relate together. It wasn't rushed in any way and I felt so much better talking it through with someone. I also received proper Epi-pen training and I would now feel confident to do it if I had to. I learnt so much and I feel anyone suffering with food allergy anxiety could benefit like me, as long as you are clued up you can feel confident to treat yourself if and when you suffer a reaction. Life is to be enjoyed and we can't let allergies get in the way of our adventure. 

Wednesday, 13 January 2016

Dr Tom Marrs - Why do so few adolescents inject adrenaline for anaphylaxis?


Speaking at our Healthcare Professionals' Conference, Dr Tom Marrs, Clinical Lecturer and Allergy Specialist, explained the reasons behind so few young people injecting adrenaline for anaphylaxis.

Asides from the reluctance to carry Adrenaline Auto-Injectors (AAI), as noted in our TakeTheKit video, there is a big problem surrounding young people knowing whether to use their AAI and when to use it. Dr Marrs reccomends that allergy sufferers learn to recognise their symptoms rather than getting to the point of going into anaphylactic shock.

It is important that young allergy sufferers manage their own allergies and parents just monitor rather than direct.

Watch the talk here: