Issuu on Google+

Logo / Wordmark - Variations

Outlook Anaphylaxis

Anaphylaxis

Campaign

Anaphylaxis Campaign magazine

Supporting people with severe allergies

news

views

Spring 2013

comment

Campaign

Supporting people with severe allergies

Spring 2011

When the background is orange / coloured

No. 43

News | Views | Comment | No. 53

ÂŁ2.00 / Free to members

Anaphylaxis Campaign logo may only be in white on a orange background. When the white background is not possible to have this logo should be used.

Eating out with severe allergy

The orange box above is for illustration only; the logo must not be placed within a box or other containing shapes.

Guidelines and advice to take in when eating out

Easter Advice Some eggplant tips to help you enjoy the Easter holidays

New Campaign Website A quick tour around our new little corner of Cyberspace

Join our Orange Wig Day on the 17th May 2013 Important new food labelling changes will take effect in 2014, find out what this means for you  

Meet our amazing Marathon runners 17 for 2013 Read how our Patrons

have been supporting us

The Campaign magazine has been made possible thanks to a grant from Debenhams plc and the Food and Drink Federation


THE

first word Where to start? It’s been extremely busy here at the Anaphylaxis Campaign since the last issue of Outlook and so much has happened!

Although we are now well into this New Year, the festivities and fundraising of the Christmas period are still fresh in our minds as we publically announce the winners of our Christmas raffle (see page 4). Thank you to everyone who bought tickets throughout December, it was a great success and we raised a very respectable amount towards funding our work. Our Christmas cards this year were also very popular and some designs even sold out! As you are all aware the Anaphylaxis Campaign receives no government funding and is dependent upon raising money from our fundraising activities and the generosity of our members. On this note, we’re hoping you’ll all be making preparations for getting involved with our fundraising and awareness Orange Wig Day 2013! Last year’s was a roaring success, with almost 200 members, friends and well-wishers donning great big orange wigs in support of the Anaphylaxis Campaign. Turn to page 22 for information on how you can get involved and help spread the word. The results of our Youth Survey were published in January in a highly esteemed journal produced by the European Association for Allergists and Clinical Immunologists (EAACI). With over 500 respondents, it is the largest survey of its kind and focuses attention on an especially vulnerable group, as many allergic individuals between 15 and 25 are only just learning to manage their allergy independently, making them particularly at risk. The results of the Survey will help us make some fundamental changes in the areas of most concern to young people. Watch this space for updates! I attended the Food Standards Agency board meeting in January. To our delight, allergens featured heavily on the agenda and sparked much debate as the issue

02

Outlook No. 53

of food labelling and allergen boxes was discussed ahead of new regulations and directives which are to be introduced for companies in the food industry. One of our main aims at the Anaphylaxis Campaign has always been to make the lives of allergy sufferers everywhere easier, and poor labelling and practices within certain parts of the food industry are issues that confront us daily. We are therefore trying our hardest to represent the interests of allergic consumers on behalf of our members while mediating the views of the food industry to come to an outcome suitable for everybody, as this is something we are really passionate about. We’re hoping to mobilise all our members in support of a worthy but little recognised cause in this issue. We’ve teamed up with the Latex Allergy Support Group (LASG) to promote awareness and action for latex allergy sufferers, who are often overshadowed by more common forms of allergy. Check out our call to action on page 18 for more information on how you can help and to get involved. Finally, did you see our Valentine’s Day campaign? Love was in the air but hopefully a little allergy awareness was too, as we sought to spread the word that allergy sufferers can’t throw caution to the wind and need to be vigilant even on the most romantic of occasions. Remember our helpline is always there if you’re in need of any support or advice and don’t forget to follow us on Facebook and Twitter. It is vitally important to us that we stay in touch with our members, friends and supporters and that we keep you up to date with developments in the world of allergy. Thank you again for your ongoing support. Lynne Regent (CEO)

lynne.regent@anaphylaxis.org.uk


IN

this issue

From

the Editor

WHAT’S New

P4-6

Meet our Patrons New ‘Anaphylaxis’ iphone app Social Media Update CAMPAIGN Activities

P8-9

Workshop update AllergyWise, how our best in class training can help you MEDICAL ADVICE AND Research

P 10 - 12

New clinical research centre in Manchester Adrenaline auto-injector updates Insect Sting Allergy treatment approved by NICE FOOD INDUSTRY Update

P 13 - 15

Food Labelling – important new changes will come into effect in 2014 Peanut allergy and Takeaways

Regulars

and Features

Latest Advice from Allergy Aunt

P7

Travelling with an allergy

P16-17

Join our Latex Allergy Awareness Campaign

P18

Members pages

P 20-21

Fundraising news and meet our marathon runners

P 22-24

Fundraising news and meet our marathon runners

IMPORTANT NOTICE: The copyright of the contents of this magazine belongs to The Anaphylaxis Campaign. If you would like to reproduce any of the items included in this magazine please contact us at press@anaphylaxis.org.uk. We are usually very happy to see messages finding additional channels however we would ask that you inform us prior to print, acknowledge the source of the material and if appropriate make a donation towards our work. This magazine is based on knowledge currently available. The information provided by third parties has been accepted in good faith, but has not been independently verified. The Campaign cannot be held responsible for any consequences arising from reliance on such information. The Campaign does not endorse any product or service mentioned in this magazine and is not responsible for and cannot guarantee the performance of any such product or service. Remember too that all of us are different and individual cases require individual medical attention. Please be guided by your doctor or consultant.

Welcome to Outlook No. 53. Lots of exciting new projects have been taking place at the Anaphylaxis Campaign over the past few months. We have had a visit from one of our celebrity patrons, Mark Foster, the World Champion and Olympic swimmer. Mark has been helping us with our exciting new film project which will be launched on our website very soon. Giorgio Locatelli the renowned chef has also joined the Campaign as a Patron. Find out more about both Mark and Giorgio on page 4. We have also launched our fabulous new online directory for our members, ‘Tried and Trusted’; here you can share your reviews of restaurants, hotels and cafes. Read more on page 20. The iPhone and iPad app for anaphylaxis which Coventry University produced with our support is also now launched, read more about this on page 5. This issue of Outlook is packed full with news and updates including the launch of our latex allergy campaign. Find out how you can get involved and also read Beth’s story of living with this allergy on page 18. Stephen Morgan, one of our young members, has written a great account of travelling to Cuba with severe allergies. Read his account and pick up some great travelling tips on page 16. There is a lot changing in the food industry with the introduction of the new Food Information Regulations (FIR) in 2014. Find out how this may affect food labelling on page 13. We are always keen to hear your thoughts on Outlook, what you would like to see more of and any particular topics which we should cover in future issues. Let us know at press@ anaphylaxis.org.uk. Until the autumn.

The Anaphylaxis Campaign, PO Box 275, Farnborough, Hampshire, GU14 6SX Registered Charity No: 1085527 Phone: 01252 546100 Helpline: 01252 542029 E-mail: info@anaphylaxis.org.uk www.anaphylaxis.org.uk

Sarah Beresford, Editor

Outlook No. 53

03


WHAT’S

New

Meet our Patrons Mark Foster

Meet our Patrons Giorgio Locatelli We’d like to welcome aboard a brand new patron for 2013 as we’ve joined forces with celebrity chef Giorgio Locatelli to help us in our quest to raise awareness and funds for anaphylaxis. Giorgio grew up in Northern Italy where his love for food and cooking was nurtured from an early age as his family ran a Michelin-starred restaurant. He has worked across Europe, from Italy to France, Switzerland to the UK. He’s been head chef at a prestigious London restaurant and has gone on to independently open a range of restaurants to critical acclaim, including most recently celebrity favourite, Locanda Locatelli. Giorgio’s series, Italy Unpacked, is currently running on BBC 2, where he is joined by Andrew Graham-Dixon in exploring Italy’s history, culture, food, art and landscape. Giorgio’s daughter Margherita, 16, has multiple food allergies and severe eczema. Despite her allergies, Margherita is a great food lover and has even expressed an interest in following in her father’s food steps into the catering and hospitality industry – and who wouldn’t, with such a great teacher on hand! Giorgio and wife Plaxy are looking forward to being active patrons for The Anaphylaxis Campaign and have already been in discussions with our CEO Lynne Regent on some exciting new plans for 2013, so watch this space!

Mark Foster is amongst the most successful British swimmers of all-time. Specialising in short course (25 metre pool) and butterfly and freestyle at 50 metres, Mark has represented his country more times and been more decorated than any other British male swimmer. Mark held both the world record for 50m Freestyle and 50 Butterfly at the same time during a glittering career spanning three decades. Mark has been a patron of the Anaphylaxis Campaign since May 2009. He won £10,000 for the Campaign in September 2009 by participating in ‘Who Wants to be a Millionaire?’ Mark has also recently assisted the Campaign by taking part in our new films, shortly to be available on YouTube and our website. Mark’s good friend, Scottish athlete Ross Baillee, sadly died from anaphylaxis in 1999 shortly after having lunch following a training session. Mark said “Before Ross’ death I did not realise that something you cannot see can be so dangerous. I want to make a difference and help people who also have severe allergies. This is why I became involved with the Anaphylaxis Campaign.” You can follow Mark Foster on twitter @MarkFosterSwim

04

Outlook No. 53

Christmas Raffle Winners Many thanks to everyone who brought tickets for our Christmas Raffle and purchased our Christmas cards! Congratulations to our raffle winners - Mrs J Armitage who won the £1,000 first prize, Mrs S Wright who won the £500 second prize and Mrs T Reed, who won the £250 third prize.


New ‘Anaphylaxis’ iPhone app developed by Coventry University and the Anaphylaxis Campaign We’ve joined forces with Coventry University to develop a newly launched iPhone app especially for people affected by severe allergic reactions. The ‘Anaphylaxis’ iPhone app was built by software developers from the Serious Games Institute at Coventry University, in conjunction with Dr Joanna KosmalaAnderson, a Research Fellow from the University’s Applied Research Centre for Health and Lifestyle Interventions, with input from the Anaphylaxis Campaign. Dr KosmalaAnderson collaborated on the project with a member of the Anaphylaxis Campaign’s Clinical and Scientific Advisory Panel, Dr Andrew Clark from the Cambridge University Hospitals NHS Foundation Trust. It is designed to help people at risk of severe allergic reaction better manage their condition. It allows users to create a personalised anaphylaxis management plan, containing details of their own specific allergens, the medications they require and emergency contact information. It also allows users to set up reminders to check their medication levels and to locate nearby facilities and services like hospitals and pharmacies while they are out and about. Significantly, the app also contains vital information about the emergency procedures to take in case of anaphylactic reaction. These include detailed instructions with video and voiceover on how to administer adrenaline using the special injectors prescribed to patients – an extremely useful function for the user as well as their friends, family or colleagues.

Dr Joanna Kosmala-Anderson said: “The app is the first on the market to feature a personalised anaphylaxis management plan that is readily available and easy to follow even for a person unfamiliar with emergency procedures. “Most patients rely on paper copies of their personalised anaphylaxis management plan. Those can easily be lost or damaged and patients often fail to carry it with them at all times. “Since the vast majority of adolescents and adults carry their phone on them at all times, the app takes care of that potential problem.” “More importantly, it ensures that users have constant access to crucial information about anaphylaxis management, including links to the Anaphylaxis Campaign’s website as well as their helpline number, and a list of potentially lifesaving procedures.” Our CEO at the Anaphylaxis Campaign, Lynne Regent, said: “This app is a useful resource to assist people with managing their allergies. We have been very involved with this exciting project from the start. Utilising technology to help allergy patients, particularly teenagers who are learning to manage their allergies independently and are likely to carry smart phones, is great and something we actively encourage.” The ‘Anaphylaxis’ app is free and can be downloaded from the App Store. Although currently only available to iPhone users, we are working to get the app ready for use on other devices and operating systems. The university want your feedback to make further improvements to the app. Please have a look in the news section on our website to find out how you can submit your

Social Media Update Facebook News Our Facebook page has been a flurry of activity, as we now have over 2000 likes! Help us get our name out there and encourage all your friends and family to get liking by sharing our posts. We have covered all kinds of threads which have really got people thinking about the world of allergy and anaphylaxis. Here is a rundown of some of the top topical talking points over the past months: - The Anaphylaxis Campaign’s Youth Survey: Our youth survey – the largest of its kind – was published recently. We had an overwhelmingly positive response on Facebook with many congratulations and thanks received from our online supporters. You said: ‘Excellent research giving young adults with allergies a much needed voice. Keep it coming!’

Twitter News - ‘Horsegate’: Discussions got heated after we consulted our Clinical and Scientific Panel on the allergy implications of the discovery of horse meat in some well-known supermarket branded burgers and meals. Many picked up on the issue of labelling and contents provenance. You said: ‘It is deeply worrying to people who have to place so much faith in the labels being an accurate reflection of the product’ Join the debates and discussions by searching ‘Anaphylaxis Campaign’ on Facebook and liking us.

We have been busy tweeting as a New Year’s resolution to keep our followers up to date on our activities and general allergy world news. So far, we’ve managed to get ourselves retweeted by patron Mark Foster and had debates with Embarrassing Bodies celeb GP, Dr Christian Jessen! We also participated in our first live ‘Twitter Chat’ in December on the subject of Milk Allergy. This is something we want to do a lot more of in 2013. Let us know if you have topics or issues you would like us to focus on at press@anaphylaxis.org.uk. Fundraising for us or want to get your allergy message out there? Tweet us and we’ll try and help! Follow @Anaphylaxiscoms

Outlook No. 53

05


Product News Visit our website or mobile site for the latest product news and alerts. Personalised product alerts are FREE for members and can be sent by either email or text message. If you have not already registered for alerts or if your contact details have recently changed, please call us on 01252 546100 or email carey.ledford@anaphylaxis.org.uk. Please note we no longer send product alerts through the post.

Latest Alerts Colgate Max Fresh Blue Beads Toothpaste Anyone with a severe milk allergy should be aware that Colgate Max Fresh Blue Beads Toothpaste contains lactose. This is listed in the ingredients. News from Nando’s impacting those with egg, milk and soya allergies. We have been informed by Nando’s that they launched a new menu in October. There have been some changes made which have implications for allergy sufferers. All such products are flagged on the new menu with the words “New Recipe”. The key changes are as follow: Dino Rolls (Kid’s menu) – Now contain eggs, milk, soya and gluten. Produced in a factory that handles nuts, sesame seeds and mustards. This change will affect the kid’s chicken burger, and kid’s garlic rolls. (The adult roll which it replaces already contains milk and gluten) Livers and Portuguese roll Liver sauce – Now contains milk and soya. (Limited impact, as the roll already contains milk) Prego Steak recipe Uses Liver sauce - Contains milk and soya. (Limited impact, as the roll already contains milk) All Nando’s restaurants have a Food & Menu Specifications book that customers can look at. This book contains all the ingredients for all Nando’s products. Nando’s advise that if you do suffer from an allergy, ask for the Food & Menu Specifications book when you visit to keep up to date with any recipe changes. If you let the manager on duty know before ordering, Nando’s say they will take the necessary precautions to minimise cross contamation.

06

Outlook No. 53

Big Bamboo Jamaican Irish Moss Vanilla Flavoured Drink, 284ml Batch/date codes: BBE End Feb 2014 Wanis has withdrawn one batch code of Big Bamboo Jamaican Irish Moss Vanilla Flavoured Drink due to undeclared milk The label states that the product contains casein without a clear reference to milk. The product should not be consumed by anyone with an allergy to milk. Home Farm Speciality Foods - various savoury sauce products Home Farm Speciality Foods has withdrawn various savoury sauce products because of inconsistent allergen information provided on the labels. If you have an allergy or sensitivity to celery, sulphites or wheat, do not eat these products. These products with a ‘best before’ date up to and including August 2013 have been recalled: • Home Farm Foods Beef Stock, 450g • Home Farm Foods Black Bean Sauce, 212g • Home Farm Foods Chicken and Rib sauce, 395g • Home Farm Foods Chicken Casserole sauce, 470g • Home Farm Foods Chicken Stock, 450g • Home Farm Foods Diane Sauce, 395g • Home Farm Foods Hoi Sin & Chilli Sauce, 212g • Home Farm Foods Hoi Sin Sauce, 212g • Home Farm Foods Plum Sauce, 212g • Home Farm Foods Red Wine Casserole Sauce, 470g • Home Farm Foods Rich Beef Casserole Sauce, 470g • Home Farm Foods Roast Beef Gravy, 450g • Home Farm Foods Roast Chicken Gravy, 450g • Home Farm Foods Sausage Casserole Sauce, 470g The allergens in these products have not been correctly mentioned on the allergen labelling information, posing a risk to those who may only check the allergen labelling information rather than the ingredients list.


ALLERGY

Aunt

our allergy aunt, moira austin, answers your questions Q:

I have anaphylactic reactions to several foods but am also sensitive to sulphites. I have noticed that adrenaline injectors contain sodium metabisulphite. I am now worried about using my injector if I have a severe reaction. What should I do?

A: According to the distributors of the adrenaline injectors currently available in the UK, sodium metabisulphite is used as a preservative in the adrenaline. In sensitive people, sulphites can cause unpleasant symptoms including lung irritation and asthma. This is not normally an allergic response, although allergic reactions to sulphites do occur on rare occasions. One of our clinical advisers has responded: “Reactions to metabisulphite are nearly always relatively mild. The only reactions of concern are asthmatic after inhalation of SO2 which is released from the surface of liquids containing sulphites. The need for adrenaline in anaphylaxis far outweighs the potential for the sulphite content to cause a problem.” Another member of our clinical board agreed. “It is very unlikely that there would be problems for those with sulphite or SO2 sensitivity who require adrenaline for a separate anaphylaxis risk.” In summary, the use of adrenaline would not be contraindicated in patients with sulphite sensitivity. For rare cases of anaphylaxis to sulphites, an allergy specialist must be consulted.

Q: My son carries adrenaline injectors for his severe allergy to milk. He has recently bought a motorcycle and all the kit that goes with it. We were wondering whether, if he had a severe reaction when he was wearing the motorcycle leathers, the injection would work through the leather?

Q: I recently bought a bar of ‘choceur alpine milk chocolate’ from Aldi. The name on the front is as stated and shows only chocolate pieces. However on the back it says in small type ‘milk chocolate with ground hazelnuts’. I think this is very misleading.

Rare cases of allergy to acorns may exist, where there could be a reaction at the point of contact, but this is not likely to be related to nut allergy. Interestingly, in parts of the world where acorns are eaten, allergic reactions to them are very rare.

A: The only legal requirement regarding the labelling of allergens in pre-packed foods is for major allergens to be listed in the ingredients, so any additional information that is given on the packaging such as allergen boxes or the sort of product description you mention that is on the back of this product, is voluntary. I assume that hazelnuts are listed in the ingredients of the product?

Q:

“My son is allergic to horse hair and in light of the problems covered extensively in the media about horse meat in beef-based pre-packed foods, I’m concerned that he may also be allergic to horse meat and therefore be at risk of reacting if he unknowingly eats something containing horse meat.

“Swiss-type” chocolate does traditionally quite often contain hazelnuts, so it’s one to beware of! And it’s important always to read the ingredients as that is where the legal requirement lies.

A: We contacted a member of our Clinical panel about this and he made the following comment:“…it is very possible that horse hair allergy could also lead to cross reactivity to horse meat. It is not invariable but certainly possible.”

Q:

If you are at all concerned, discuss this with your allergy specialist.

My son is allergic to tree nuts. Is he likely to have an allergic reaction if he handles acorns?

A: I’m not aware of any research studies or case reports of allergic reactions associated with skin exposure to acorns in people with nut allergy. There is likely to be no significant risk of an allergic reaction if someone with tree nut allergy comes into contact with acorns.

If, after checking food labels carefully and heeding any allergen warnings, you have an allergic reaction to a food that you shouldn’t be reacting to, always try to keep a sample of the food and also the product packaging. If necessary, the product can be tested.”

A: We have contacted the distributors of both Epipen and Jext and the view seems to be that although the injectors have not been tested specifically on this type of material, the needle should go through the single thicknesss of leather without a problem. However, motorcycle leathers do have thicker reinforced material in some parts (the “armoured” areas). It is unlikely that the injectors would penetrate these thicker, reinforced areas. In short, both injectors are designed to go through thick material such as denim and army fatigues and should penetrate a single thickness of leather, but might not penetrate padded or “armoured” areas of the material.

Outlook No. 53

07


CAMPAIGN

Activities

Have you attended one of our Workshops? The Anaphylaxis Campaign has been running workshops to offer support and education to allergic families for over a decade and in this time has helped thousands of people to understand the condition and how long term management can reduce anxiety and further reactions. Last year we decided to expand the audience for our workshops and offer a wider opportunity for people to learn to manage their allergy so we piloted a session at Llandough Hospital Cardiff to be run during clinic hours, which in this case was a Tuesday. The event was advertised through the allergy clinic and the Anaphylaxis Campaign membership and proved to be a huge success with 18 adults and 13 young people (aged between 11 and 18). The format of these sessions is the same as the weekend workshops but opening the invitation to a greater number of local families and holding the event at a clinic means we are able to reach a wider audience. In addition we held a very successful information evening for adults at the Heath Hospital, Cardiff. Based on the success of the Cardiff pilot we are holding three allergy clinic sessions in 2013: Southampton; Newcastle and Cardiff. For more information on workshops for 2013 visit http://www.anaphylaxis.org.uk/events?cat=1 or email mandy@anaphylaxis.org.uk

Want to improve peanut allergy understanding and earn up to £800? A member of the Anaphylaxis Campaign’s Clinical and Scientific Panel is looking for participants for a new study being conducted into peanut allergy. Participants will be paid up to £800 for their time and will get to be a part of some ground breaking research! Dr Andrew Clark is running the TRACE peanut study, Dr Clark is a consultant in paediatric allergy at Addenbrooke’s Hospital and perhaps best known for his exciting study of oral desensitisation for peanut allergy, which captured world-wide media attention in 2010. He is now conducting this much larger study which has the potential to dramatically change the way food allergy is treated. This latest study seeks to understand more about peanut allergy, with the aim of improving allergen labelling on foods. Participants will learn more about their allergy and also contribute to wider understandings about peanut allergy and allergy in general. So, if you’re aged 18-45, have a peanut allergy and are otherwise healthy, you could be eligible to participate in the TRACE clinical study, which is taking placed in London and Cambridge. If you are interested in taking part please see the TRACE website - www. tracestudy.com for more information.

08

Outlook No. 53

Our next Healthcare Professionals Conference will be held on Thursday, 10 October 2013 at St Thomas ’ Hospital. These highly popular events, which are complimentary for healthcare professional members of the Anaphylaxis Campaign, feature top speakers from the world of allergy. Previous speakers have included Dr Adam Fox, Consultant Paediatric Allergist at Guy’s & St Thomas’ Hospital, London; Sue Clarke, Clinical Lead for Allergy at Education for Health, and Nurse Adviser to the Anaphylaxis Campaign and Rene Crevel, Science Leader for Allergy and Immunology at Unilever. The events also offer our Professional members the opportunity to network with fellow health professionals and with Anaphylaxis Campaign staff. Book your complimentary place today in the events section on our website

Key dates, Spring/Summer 2013 Anaphylaxis Campaign Family Workshops Saturday 20st April 2013

- Exeter

Sunday 9th June 2013

- Sheffield

Sunday 29th September 2013

- Guildford

Anaphylaxis Campaign Parent Workshops Sunday 21st April 2013

- Exeter

Saturday 8th June 2013

- Sheffield

Sunday 6th October 2013

- Guildford

Anaphylaxis Campaign Adult Information Session Tuesday 2nd July 2013

- Southampton

Anaphylaxis Campaign Support Groups Monday 18th March 2013

- London Waterloo

Tuesday 19th March 2013

- Yorkshire

Thursday 21st March 2013

- Guildford

Monday 1st April 2013

- Manchester

Monday 6th May 2013

- Manchester

Wednesday 8th May 2013

- Worthing


AllergyWise Our first class training will ensure that you provide the best support for those at risk of severe allergic reactions and you are both prepared for emergencies should they arise AllergyWise online training courses are now available in three versions;

• Individuals and Carers • Healthcare Professionals • GPs and Practice Nurses. Order your copy today from our website, or by phone – 01252 546100 Dr Jo Walsh, GP and a member of our Clinical and Scientific Panel said; “I have worked through all three of the AllergyWise courses as part of my role supporting the Anaphylaxis Campaign as a member of their Clinical and Scientific Panel. I have realised what a powerful resource AllergyWise must be for parents or sufferers wishing to know more about the severe allergies they live with and how much more confident they must make school nurses feel about dealing with allergic emergencies. The scenarios really enhance the learning by making it so real. As a GP with an interest in allergy, I learnt so much from the first two courses when they were developed. The new course aimed at GPs and Practice nurses combines

Outlook  copy  –  pages  8  -­‐9  Campaign  activities    

the best of these two courses with practical learning points and tips for those dealing with the ongoing care and hopefully, much less often, actual severe life threatening allergic emergencies. The course aimed at GPs and Practice Nurses is beneficial for those with any level of background knowledge. It is a course focussing on severe, life threatening emergencies and managing those living with this risk. The Allergy & Free From Show 2013 New dates, new hall and FREE tickets for all Anaphylaxis Campaign members!

Even the most experienced doctors and nurses will, I am sure, find it a great refresher of the knowledge they have, whilst it slowly builds up from basic principles for those with less experience. Even the most experienced will also, I tickets, courtesy of Anaphylaxis Campaign! am sure, find some hidden gems ofFREE information useful for both themselves and www.allergyshow.co.uk/go/anaphylaxiscampaign their patients.”

Meet the Anaphylaxis Campaign team and get expert advice at The Allergy & Free From Show 2013. Best of all, tickets are free! Taking place from Friday 7 to Sunday 9 June (National Hall, Olympia, London), the show will be packed with severe allergyspecific content, such as seminars, products and shopping, plus the Anaphylaxis Campaign team will be there to offer expert advice and help on how to manage your anaphylaxis!

Once again, Anaphylaxis Campaign are offering all you unlimited free tickets to the show. To claim yours, visit:

NEW to 2013: V Delicious – the Veggie Good Food Show

FREE tickets, courtesy of the Anaphylaxis Campaign! 13

The Allergy & Free From Show 2013

Co-locating with The Allergy & Free From Show 2013 is brand new event, V Delicious - a fabulous gastronomic and culinary entertainment day out, for visitors to reel in the passion for vegetarian and vegan food, drink and living. Get your free tickets now at www.v-delicious.co.uk/go/anaphylaxiscampaign.

New dates, new hall and FREE tickets for all Anaphylaxis Campaign members! Meet the Anaphylaxis Campaign team and get expert advice at The Allergy & Free From Show 2013. Best of all, tickets are free!

Once again, the Anaphylaxis Campaign are offering all of you unlimited free tickets to the show. To claim yours, visit:

Taking place from Friday 7 to Sunday 9 June (National Hall, Olympia, London), the show will be packed with severe allergy-specific content, such as seminars, products and shopping, plus the Anaphylaxis Campaign team will be there to offer expert advice and help on how to manage w w w. a l l e r g y s h o w. c o. u k / g o / Outlook   copy  –  pages  8  -­‐9  Campaign  activities   your anaphylaxis! anaphylaxiscampaign  

The Allergy & Free From Show 2013 New dates, new hall and FREE tickets for all Anaphylaxis Campaign members!

     

NEW to 2013: V Delicious – the Veggie Good Food Show

 

 

 

The Allergy & Free From Show 2013 is organised by Allergy Events Ltd, 119 High Street, Berkhamsted, Herts, HP4 2DJ T 01442 289 920 | F 01442 502 040 | E info@f2fevents.co.uk | W www.allergyshow.co.uk

Co-locating with The Allergy & Free From Show 2013 is a brand new event, V Delicious - a fabulous gastronomic and culinary entertainment day out, for visitors to revel in the passion for vegetarian and vegan food, drink and living. Get your free tickets now at www.v-delicious.co.uk/go/ anaphylaxiscampaign.

Outlook No. 53

09

 


MEDICAL ADVICE &

Research

New clinical research centre for the University Hospital South Manchester (UHSM) Allergy Centre The £2.45 million NIHR-funded clinical research centre was opened on the 14th December 2012 by Dame Sally Davies, the UK’s Chief Medical Officer. Karen James, Acting Chief Executive of UHSM, the Trust which runs Wythenshawe Hospital says there is clear evidence that people who are treated in hospitals that undertake clinical trials have better health outcomes. She explains: “This is because they are more intensively monitored and the level of their care continues after the trial has finished. Manchester has some of the poorest health indicators in the country. That’s why we are proud of our track record of taking lab bench work and turning it into patient benefit and the new Centre will help us deliver even more. Dame Sally Davies really enjoyed her visit to our new facility and asked staff many questions about our current and upcoming trials and it was fantastic to see how inspired she was by UHSM’s achievements.” The University Hospital South Manchester (UHSM) Allergy Centre was set up by Professor Adnan Custovic in January 2004 and since 2009 it has been fronted by a dedicated full time NHS Consultant Allergist, Dr Susanna Marinho. The service has since expanded considerably and provides comprehensive allergy care for adults, offering a holistic approach to diagnosis and management of a wide range of allergic disorders.

It also has close links with the Paediatrics Service, providing the same range of comprehensive allergy care to children. It is an integrated clinical and research unit with an active research programme, ensuring that patients have access to the latest advances in the diagnosis and treatment of allergic diseases. This includes the Manchester Respiratory and Allergy Biobank (ManRAB), headed by Professor Angela Simpson, and portfolio of allergy research undertaken in collaboration with University-based research teams under the umbrella of the Manchester Academic Health Sciences Centre.

Since the recruitment of Professor Clare Mills, leader of the EuroPrevall project, to the University of Manchester, food allergy research has become an important focus and is a theme within a recently awarded National Institute of Health Research (NIHR) Clinical Research Facility. Clare Mills and the University of Manchester team are also leading on a new 4 year EU funded project: Integrated Approaches to Food Allergen and Allergy Risk Management (iFAAM). 38 organisations from across Europe, including patient groups such as the Anaphylaxis Campaign are involved in this project, which is seeking to develop food allergy management plans and dietary advice to support the estimated 20 million European citizens suffer from food allergy. The project, which is to be launched in Manchester in March 2013, will be looking at: (1) how maternal diet and infant feeding practices (including weaning) affect the patterns and prevalence of allergies across Europe (2) risk factors in the development of severe reactions to food (3) developing a risk management approach to allergens in the food chain for food producers (4) developing new methods of analysis for allergen management across the food chain

Karen James, Acting Chief Executive of UHSM with Dame Sally Davies, the UK’s Chief Medical Officer

10

Outlook No. 53


Introducing the newly designed EpiPen® (adrenaline) Auto-Injector from MEDA Are you prescribed an EpiPen®? If so you may be interested to learn more about the newly designed EpiPen®which has recently been launched. Whilst the familiar administration technique and actual adrenaline remains unchanged, the new look device has been developed following consultation with patients and healthcare professionals and is designed to improve correct administration and patient safety. The EpiPen® (adrenaline) Auto-Injector device now has the following new features: •

Bright blue safety cap – making it easy to distinguish from the orange needle end. In patient education ‘blue to sky’ will make it easier in an emergency to remember which way up the device should go. The blue safety cap needs to be removed before use.

Bright orange built-in needle protection – the needle is now covered at all times, during and after use, reducing the risk of needle stick injury and potentially more acceptable for those patients with needle phobia. Once the needle cover is deployed following injection of adrenaline it cannot be retracted.

Oval shaped – a new ergonomic shape makes the EpiPen® (adrenaline) Auto-Injector device easier to grip and more comfortable to hold. In addition the oval shape will reduce the risk of rolling off uneven surfaces.

• Easy to read, illustrated instructions all the information on how to correctly administer EpiPen® (adrenaline) Auto-Injector is now clearly displayed on the pen with illustrations, making it easy for anyone to understand how the device should be administered.

New smartphonestyle adrenaline injector launched in the US Auvi-Q is the first compact auto-injector with both audio and visual cues that guides patients and caregivers step-by-step through the injection process. Eric and Evan Edwards, twin brothers who suffer from life-threatening allergies, developed Auvi-Q with a team of world-class engineers and scientists. The development process incorporated real-world experiences and feedback from patients and caregivers. Available in two different dosages, Auvi-Q 0.3mg delivers a 0.3mg epinephrine injection and is intended for patients who weigh 66 pounds or more. Auvi-Q 0.15mg delivers a 0.15mg epinephrine injection and is intended for patients who weigh 33 – 66 pounds. Auvi-Q has not been studied in patients weighing less than 33 pounds. Each Auvi-Q pack contains two devices - each containing one dose of epinephrine - and a nonactive training device. We will keep you updated on Auvi-Q’s developments and announcements and if there are plans to bring the device to the UK. In the Anaphylaxis Campaign’s recently published study – “Living with severe allergy: an anaphylaxis campaign national survey of young people” (Worth et al., Clinical and Translational Allergy 2013, 3:2 (22 January 2013) - only 66% of survey respondents reported carrying their auto-injector everywhere they go, with a further 28% reporting they carried it most places.

• Viewing window – designed to check that the solution is clear and colourless and to confirm the injection took place. The new EpiPen® (adrenaline) Auto-Injector device is also supplied with a new protective hard flip-top carry case which makes it easier and safer to carry around. Stocks of the old device will be gradually phased out and there is no need for patients to replace or exchange their existing EpiPen® (adrenaline) Auto-Injector before their next scheduled repeat prescription. Access more information on www.epipen.co.uk.

Outlook No. 53

11


Advertorial

Launch of new website for people managing serious allergies and asthma! www.AllergyLifestyle.co.uk ‘I was inspired to set up Allergy Lifestyle after our third child Aisling developed eczema and serious food allergies as a baby. When she suffered a life threatening exposure to peanuts coming up to her second birthday, I began to source practical, reliable products to keep her safe. Aisling has peanut, egg, sesame seed, dustmite allergies and hay fever. Now as a healthy and active eight year old, she considers herself my business partner and takes her role very seriously, personally approving all products! Former Biomedical scientist and mum of four, Anne Walsh explains her inspiration for setting up AllergyLifestyle.co.uk which was launched in February 2013 to raise awareness of serious allergies and to source and supply quality, reliable products that offer genuine value to help those managing serious allergies and asthma.

Anne added that ‘we understand that a life threatening allergy diagnosis can be a worrying and confusing time which is why Allergy Lifestyle will host an on-line community where you can share information, tips and help each other negotiate our way through the Allergy Lifestyle’ ‘We know from our family experience that it is an adjustment to living with serious allergies, yet you want to live as normal a life as possible, so the new website brings together a range of over 100 guaranteed allergy and asthma friendly products including Adrenaline and Asthma Inhaler Cases, Allergy Alert Clothing, Stickers & Tags, Translation Cards, Books and Medical Alert Jewellery for adults and children. We hope you enjoy browsing our new site AllergyLifestyle. co.uk and find our products and information useful. All feedback is welcome and don’t forget to sign up for our newsletter. Together we can raise Allergy Awareness and help keep our families safe!’ As a welcome gift to Outlook readers, quote ‘Outlook53’ to get free delivery on all products during March.

12

Outlook No. 53

‘Pharmalgen’ Insect sting allergy treatment highly effective, say Trust experts The National Institute for Health and Clinical Excellence (NICE) issued its final guidance on Pharmalgen for the treatment of venom allergy in February 2012. The guidance recommends Pharmalgen as an option for the treatment of IgE-mediated bee and wasp venom allergy in people who have had: • a severe systemic reaction to bee or wasp venom or • a moderate systemic reaction to bee or wasp venom and who have one or more of the following: a raised baseline serum tryptase, a high risk of future stings or anxiety about future stings. The appraisal also recommends that treatment with Pharmalgen should be initiated and monitored in a specialist centre experienced in venom immunotherapy. The Anaphylaxis Campaign was the patient/carer group consultee for the appraisal


FOOD INDUSTRY

Update

Food labelling – important new changes will come into effect in 2014 Allergy advice boxes on food packaging, which some manufacturers use to provide shoppers with a list of the major allergens that appear in the product, will no longer be permitted under a new European law coming into force at the end of 2014. Information about the use of allergenic ingredients will be restricted to the list of ingredients.

Shoppers will also begin to see 14 major allergens presented in the ingredients list a different way. Under the new law, each of those allergens will have to be emphasised “through a typeset that clearly distinguishes it from the rest of the list of ingredients, for example by means of the font, style or background colour.” The authors of the Food Information Regulation believe this will help anyone shopping for a person with food allergy to spot the major allergens at a glance. The disappearance of allergen advice boxes – also known as “contains panels” – may perturb many shoppers, who see them as a way of making their shopping easier. Instead, people may see a brief statement drawing their attention to the ingredients list and explaining how the allergenic ingredients are highlighted. On the plus side, these changes will ensure consistency between different food producers and consumers will only have to look in one place – the ingredients list – to get the information they need.

The 14 allergens that must be labelled are peanuts, tree nuts, milk, egg, sesame, soya, fish, shellfish, molluscs, lupin, celery, mustard, gluten and sulphites above a concentration of 10 parts per million. The restriction on “contains panels” will not apply to precautionary (“may contain”) warnings, which will still be permitted. Nor will it apply to “contains” messages on products such as wine, where there is no ingredients list so allergens are listed in a special contains statement. The Campaign has always had mixed feelings about “contains” boxes, fearing that people come to rely on them and neglect to look at the ingredients list. This becomes dangerous if people assume that because there is no allergy box, the product must be safe for them. This is not necessarily the case because the use of advice boxes has been voluntary and some food companies have chosen not to use them. Note that some companies are likely to phase out “contains boxes” before the 2014 deadline.

Outlook No. 53

13


Advertorial

The Cadbury Easter Egg Range Cadbury Easter products are a treat for all the family to enjoy. We work hard to ensure there is choice for everyone including those who suffer from allergies a nd intolerances. Easter Eggs: All Cadbury Easter eggs are made up of two parts: a delicious Cadbury chocolate shell and a scrumptious bar or bag of chocolates including Mini eggs, Twirl, Flake, Roses, Curly Wurly and Buttons amongst others. The bars and bags of chocolates are standard products and as such their allergen profile will be the same as if you were to purchase them separately from the shop.

The Cadbury chocolate shells are all made with Cadbury Dairy Milk milk chocolate and are produced in a factory which carries a real risk of cross contamination of tree nuts (hazelnuts, brazil nuts, almonds etc). In most cases, the ingredient declaration and allergen warnings of the chocolate shell are different to the bar or bag contained within.

Information on some of our other Cadbury Easter products: Cadbury Creme Egg – This product remains non nut. The allergen profile is: Contains Milk, Egg, Soya.

Therefore, in order to provide as much information and choice of product to everybody, we label our Easter eggs in two parts to match the component makeup. On our packs you will find ingredient, allergen and nutrition information relating to the milk chocolate shell followed by the same format for the bars or bags. We believe this labelling approach will help allergenic consumers to make an informed choice on the suitability of our Easter eggs to their diet.

Cadbury Mini Creme eggs – this product has a slightly different recipe and is produced in a different factory. The allergen profile for this is: Contains Milk. May contain: Nuts, Soya. Cadbury Dairy Milk Caramel egg and Mini Caramel eggs have the same recipe. The allergen profile for these products is: Contains Milk, Soya. May contain: Nuts, Egg. For our full range of Easter offerings with allergen information please visit the website www.cadbury.co.uk or check out the individual packs in store.

If you have a peanut allergy please be vigilant when eating takeaways Food supplier fined following a trading standards investigation Cumbria County Council’s Trading Standards team successfully brought a case against ‘Euro Foods Ltd’ a North-East food wholesalers, who put peanut allergy sufferers at risk in Cumbria by supplying products containing peanuts rather than almonds to two Cockermouth takeaways. The takeaway premises themselves had no knowledge that the product they were introducing into their recipe for Chicken Tikka Massala was not almond powder.

14

Outlook No. 53

Angela Jones, Trading Standards Service Manager said: “Peanuts are a cheaper food to source than almonds, and it is absolutely unacceptable that the almonds were substituted and sent to the takeaway outlets, who are not at fault. In the worst case scenario the actions of Euro Foods Ltd could have been life threatening for some people. We were lucky in this instance that no peanut allergy sufferers were affected by these incorrect supplies.” Our CEO, Lynne Regent, has written to Cumbria Country Council to thank them for their investigation into Euro Foods and successfully bringing the case to court. We also published this story on our website and social media channels as soon as we were alerted to it. Ensure you are following us on Facebook and twitter (@ anaphylaxiscoms) to get these important updates promptly.


g n i v i l / k u . .org s i x a l y h p a le p o e p w w w.an g n u /yo s i x a l y h p a with-an Don’t forget to visit our Young Person page on our website. We now have a mobile site too, which is easier to view from your smart phone.

For children & adults who need to carry prescribed medicines

Safe Summer! • Stay cool when abroad • Easy to find in an emergency • Thermal protection for your adrenaline • Clearly identified thermally lined medical bags

Our new YouTube films will be available soon! At the Campaign we have become film directors and production managers over the past couple of months! Very soon you will be able to see the result of our work on YouTube and our website. Our film stars have included our patron the World Champion swimmer Mark Foster, and professional actor, John Schwab, who recently appeared in an Oscar nominated film! Our films will cover information about the Campaign, severe allergy and what to do in an emergency. We have lots of great video case studies to share with you too, including a student managing her allergy at Uni. Keep checking our Facebook page to find out when the films will be available for you to view.

For more information: +44 (0) 1252 820321 www.yellowcross.co.uk

Outlook No. 53

15


e r e h t t Ou

News for our younger members and their families

nture, e v d A n a b u My C Morgan, 17 by Stephen

A big

K T H AN

se risks, one There were of cour guage. The being with the lan in Cuba is spoken language the holiday I Spanish, so before lation cards. ns tra e prepared som invaluable These have proved when ordering on previous trips e message th food to help get vere my se w ho across about ed my cooling ck pa o als I allergy is. erged in water pack - when subm e water and th the beads absorb renaline autoad y m pt therefore ke ct temperature injectors the corre liday. though out the ho

YOU

o e wh ryon e v e to in part took y urve the s

Youth Survey Results

We’re very excited to announce that our survey of young people with severe allergies has been published in a paper titled ‘Living with severe allergy: an Anaphylaxis Campaign national survey of young people’ in Clinical and Translational Allergy. It is available to the public at www.ctajournal.com. This survey was conducted in order to learn how we can best support this group, which many view as the most at-risk of a serious reaction. We are currently working on an action plan around the findings and we will keep you up-todate on our progress. Watch this space!

16

Outlook No. 53

a range of I have experienced South Africa, m fro overseas trips to France Egypt and America to travel and and Holland. I love my favourite of e Geography is on subjects.

ng of travel, I Early on the morni and mustard prepared two ham with me for ke sandwiches to ta had a large the flight and also evious travel, breakfast. From pr ded to eat the it’s not recommen requested an ce on airline food. I free, dairy free egg free, shellfish l on board and and nut free mea elette! Now I was served an om n food. ow always take my

ol trips abroad, Taking part in scho to foreign s ay and family holid some may feel , es tri un speaking co hylactic, but I is risky being anap . Anaphylaxis is feel it’s part of life it comes with me. just part of me so to all nuts, eggs I am anaphylactic I only recently and shellfish and iry allergy grew out of my da in search of the Our annual holiday me, my sister and sun in 2012 took ric, colour ful parents to the histo o weeks. I tw r fo island of Cuba suppor ted by my have always been never held back parents and I have country. w to experience a ne

ack bars I also took some sn e each day if enough to have on metimes it’s so e us required beca e to find ‘hunger hard in a new plac need one. After snacks’ when you hotel, I spoke arriving at our first uld be with wo o to our guide wh o weeks and told us for the next tw gies. He was him about my aller d found out very suppor tive an t the bread in ea d whether I coul recommended a the morning and


lidays first tour group ho This is one of our or t pp su s available to ea with a guide alway got ve good restaurant to ha I ps evious tri us. However on pr cards. n tiring journey. io lat ns tra e ite happily with th qu by lly us , parents have ua g with my allergies previous trips my On r he eit After 17 years livin m n lation cards fro enu I normally ca m sourced the trans fro n sio when I look at a m ly ca te oc lu e so ich will be ab friends, or on on , wh UK ng hi gy et ler m Al so t selec I used g meal and lunch an embassy. fine. Each evenin my g rin de or en wh s rd ca n io other my translat oblem to travel and see ere never was a pr have always loved I y m , preference and th e ys se da r w ve and I ne dered. After a fe parts of the world little with what I had or lar rice and ion. It can take a gu re ict e str th re to a as ed m es gi er all ch but I ar d se I grew accusto en an e extra re either pork or chick planning, and som e or m ver had e ne black beans with lik ve y ha effor t and I oked in a simple wa it’s well worth the d knew that it was co ste tru d ! n restaurants an a reaction abroad all the other Cuba was. it d an fe sa e th that it would be mething new for urage you to try so co en I here at wh , perhaps somew s always aware of your next holiday or ish Our tour guide wa gl of En le h up uc k so m rved and on a co that does not spea It’s great ? t we were being se pe ea d ro ul Eu co I de at tsi ou e know wh somewhere that is mpaign occasions he let m the buffet lunch. the Anaphylaxis Ca t k ou an th ab y d all ire re I qu en n! fu er the ov as he had e m d re y parents an casion when we we for suppor ting m ving gi d There was one oc an we ns ich tio wh es ering our qu tary pudding sw en an em s pl ar m ye co ed em e rv se s awar encourag ent was flan which I wa vice. Without their ad t ea gr e m did not choose. It ca ide so many different wever the tour gu ay not have seen m I I could not eat, ho I at th young age. e to let me know countries by this over from his tabl e that he m d re su as re ich could not eat it wh cting However, contradi Enjoy your travels was caring for me. here yw er ev be t no d ul co he ew kn this was I s mine to responsibility wa Stephen and the ultimate t. ea to at wh e cid de e nslation card for th I used the same tra d an e pl sim s wa ich whole holiday, wh ef to r the waiter or ch fo d ar rw fo ht aig str ly re very seve read. It said “I am cooked ng hi yt an allergic to d Shellfish. with Nuts, Eggs an y of these an if Can you tell me ordered?” ve ha I at is used in wh r use in an I also had cards fo didn’t need to emergency but I use them. r our t that evening afte

arrived Each new hotel we at I wh t at I would find ou e th g in us was able to eat t of bi a d an s rd ca translation pointing.

F ind u s at: @anaphy

laxiscoms

Visit u s on:

Anaphyla xis

Campaign

Outlook No. 53

17


Campaigning Diane Ferrari tells us about her unforgettable summer volunteering for the London 2012 Olympic Games “I was one of the 8,000 London Ambassadors who supported the Olympic Games. We helped to ensure all the visitors from abroad or home had an unforgettable and enjoyable time in London. We trained for almost two years beforehand and it was an experience of a lifetime! In terms of my managing my allergies I prepared a sandwich or a salad at home to take with me. Some people did ask why I didn’t eat at the various catering establishments, so I told them about my anaphylaxis and they were slightly shocked. I managed to reassure them that I never left the house without my adrenaline auto-injector and my life saving kit as I call it – a little red bag that I keep in my handbag, in red so that I can see it quickly. Inside I’ve got my allergy passport which tells people everything I’m allergic to and what to do in an emergency. I’ve also got a device that helps keep my adrenaline auto-injector at an even temperature, too, which was good for long hot days spent volunteering. I’ve also got my antihistamines, cortazone and a little note to say exactly what I have to do. I was keen to make the people I was working with aware of my allergies, but not to scare them, sometimes it terrifies people and they become oversensitive to my condition. There was a great spirit at the games and we all helped each other.”

Latex Allergy Interview with Beth Repath Could you give us a brief outline of your allergy? I’m known as having a type 1 systemic reaction to latex which means that I react in multiple areas across my body, including airways, circulation and skin. I am allergic to the proteins contained within latex and I react not only through direct contact but also indirect contact. It’s probably the most extreme form of the latex allergy. Have you ever had an anaphylactic response? I’ve had 16 anaphylactic responses in the last 12 months. When it comes to latex allergy you cannot avoid latex or latex associated proteins very easily, as these can be mimicked by other substances. This can cover things like fruits such as bananas; chilli, avocado and some nuts, like walnuts, cashews and chestnuts but also peanuts. Once you have this sensitivity, it can extend to all nuts. As far as I’m concerned, I have a nut allergy as well as having a latex allergy. There are roughly around 100 different foods that contain proteins similar to latex which means you’re very limited in how you can live your life. It’s quite a major allergy, affecting people’s lives more than others assume it does. Can you give me an example of a time you have had a severe reaction? I go into a restaurant and immediately ask the waiter whether they use latex in their food preparation or whether they give latex balloons out and they say no. I then have a two course meal which is absolutely fine because I always check what is contained in anything I’m eating. Then I might start to feel very ill, with a feeling of impending doom, violent coughing and wheezing. I then realise that one of the other members of staff hasn’t heard about my allergy and has begun to blow up balloons within the restaurant. This then causes me to go into full anaphylactic response What actions do you take after an incident like this? The only advice that I’ve had from the professionals is that you have to inject with adrenaline. Normally breathing gets so difficult so quickly with my latex allergy that I’m auto-injecting adrenaline between one and three times before an ambulance arrives within thirty minutes. They then inject again on arrival. I’m

18

Outlook No. 53


then given things like Piriton and steroids injected in high dose form. I also need a nebuliser to help my airways and stop the broncho spasms. Normally, because my anaphylaxis with latex is quite severe and frequent, I am generally admitted to either a coronary care, high dependency or intensive care unit for up to about 18 hours. This is because some hospitals are not latex free environments and you have to be moved out quickly from resuscitation to prevent from a secondary reaction occurring. How many adrenaline auto-injectors do you carry? I have a medical bag containing four with me at all times. Then I have four at home, four at work and three in my car. At any one time I’m in easy access to seven pens. With my anaphylaxis, the least I’ve ever needed is two and the most I’ve needed before an ambulance has arrived is four. When were you first diagnosed? I was diagnosed as having latex allergy when I was in university in 2003. What medical help and advice have you received? Are you currently seeing an allergy specialist? I see an allergist. With latex allergy, it’s unlikely that sufferers will be away from a specialist like this for more than three months at a time. You need to be able to see them quickly and it’s an on-going battle for them to try and keep your allergy stable and in check. I also have to wear masks, gloves and barrier creams. Is there anything else people should know about how it is to live with a latex allergy? People may not be aware that latex isn’t just in balloons and gloves, it is in everyday things like tarmac, concrete dust or the

verruca socks people wear at the swimming pool. This commonness means there may be someone who doesn’t know that they have a latex allergy and assumes that it’s hay fever or asthma. However they may well be having continuous reactions that aren’t being dealt with. The main issue here is with awareness, as this allergy is based and gets worse on repeat exposure. You cannot be born with an anaphylactic response to latex. Latex items like balloons are very dangerous to people with latex allergy because of the airborne side of the allergy. Changing from using latex to synthetic alternatives, like foil, would make such a difference to people like me. From my point of view, if even ten people could just realise how much of a difference changes like this would make, I would be maybe be able to go to a shopping centre or restaurant without worrying about whether I’m going to stop breathing, or end up in intensive care because that’s generally what happens which is terrifying for me.

Get involved with our campaign to raise awareness of Latex allergy Together with the Latex Allergy Support Group (LASG) we have prepared a letter that can be sent to retailers and restaurants if they are seen using latex balloons for their promotions. This letter explains why balloons are such a risk to people with Latex allergy. If you see balloons in shops or restaurants please go to our website where you can download the letter, or drop us an email to info@anaphylaxis.org.uk so we can either send you the letter to give to the manager of the business concerned or we can send. Many thanks!

Comment from the Latex Allergy Support Group (LASG) There continue to be problems for patients with latex allergy accessing safe healthcare and a lack of awareness among many doctors of the clinical problem as well as a lack of awareness of the latex content of many items in general clinical and non-clinical use. There is better awareness among dentists as their professional bodies have issued guidance. Labelling of products and items in general and clinical use is still lacking in many areas. Latex balloons are still widely used as a form of cheap advertising of events or as promotional giveaways. We have even seen them used at healthcare events. For all these reasons we continue to have daily enquiries and requests for support not only from the UK but also from overseas including the US. Membership of the Latex Allergy Support Group is only £10 per annum and can be paid using PayPal on our website www.lasg.org.uk. There is also a managed Forum where latex allergy sufferers support each other with practical information.

Using a translated Dietary Alert Card abroad or an English Dietary Alert Card while eating out in the UK:explains your dietary needs discreetly avoids 'corruption' of your message between table and kitchen validates your meal requests as a medical requirement

see or telephone Sandra on 01506 635358 Cards available in Arabic, Bulgarian, Chinese, Czech, English, French, German, Greek, Hungarian, Italian, Japanese, Polish, Por tuguese, Romanian, Russian, Spanish, T hai, Tur kish

Outlook No. 53

19


MEMBERS

Pages

Friends of the Anaphylaxis Campaign We hear from many grandparents, aunts, uncles, brothers and sisters who want to support us with a regular donation, but don’t feel like they need to become a member and receive all of our correspondence and membership benefits. For these friends and family members of an allergic person, we have created the Friends of the Anaphylaxis Campaign Programme. If you know of someone who may like to become a Friend so they can support us and keep up-to-date on our work, please share the information below.

Did you know...? •

120,000 individuals have an episode of anaphylaxis requiring A&E attendance each year

Repeated reactions are seen in about 50% of those with a diagnosed food allergy despite their efforts to avoid the foods to which they react.

Children who are allergic to food are often found to be suffering from anxiety and are increasingly lonelier. One allergic child out of five never attends peers’ parties.

Hospital admissions in the UK due to food allergies have increased by 500% since 1990.

We need your help to improve these grim figures. For just £5 (minimum donation) annually you can help us to develop initiatives to educate the public and continue our work with food manufacturers, government agencies, schools and nurseries to keep the allergic community safe. We will keep you up to date with the Campaign’s achievements and you will be making a difference to so many allergic people. We rely on our Friends to further the growth of the Campaign. A larger supporter base gives us a louder voice and will enable us to expand our work providing a safer environment for everyone with severe allergies.

20

Outlook No. 53

Tried and Trusted

Want to find the best places for allergy-friendly dining and travel?

We understand that getting out and about when you or a family member has a severe allergy can be daunting. You can end up feeling so stressed worrying about whether you can trust a place to understand your needs that it can be overwhelming and easier to just stay home. That’s why the Anaphylaxis Campaign has developed a system exclusive to members for sharing your experiences, through our brand new member review directory called ‘Tried & Trusted’. Here you can input your reviews of the very best (and very worst) restaurants, pubs, airlines and hotels with regards to their allergy understanding. You’ll tell others about your experiences and give each location a star rating according to a range of criteria, including how accommodating, understanding and savvy establishments were with when it came to your allergy requirements. Other members can then log on and browse these reviews. If you don’t agree with what you see, you can add your own review and make your opinions count. This system of sharing and rating experiences will make it easier to find somewhere the whole family can enjoy to eat out, celebrate an occasion or go for a weekend away. And remember, these are reviews of places Tried and Trusted by people like you – who better to tell you where will accommodate your allergy than those who have tried it and know you can trust it!


In memory of Ethan Thomas By Rod Thomas, Father

Ethan Thomas was our eleven year old son who died on Sunday 17th June 2012 from Anaphylaxis. It was Fathers Day and we had ordered Ethan’s favourite food from the local curry house. He had always had the same meal from this eating establishment and had always enjoyed it. But for whatever reason on this particular occasion he developed an allergic reaction which happened very quickly. Although an adrenaline auto-injector was administered at the time it was not enough to save Ethan’s life from Anaphylaxis. Ethan had had a reaction a few years previously. Immediately we administered the adrenaline auto-injector, we called an ambulance and he recovered quite quickly. However his final reaction was severe and very sudden with a disastrous outcome.

Ethan was a fun loving young boy and has a twin brother called Tre. Ethan had just started to blossom at his local High School in Loughborough, Leicestershire. He had recently been to France on a school trip and had enjoyed it immensely. Ethan’s interests included reading books, baking, cooking and watching his favourite programmes on the Disney Channel. He was a keen astronomer and liked to read books about planets and the solar system. Ethan always had an amazing personality and had a knack of making you laugh with one of his funny stories. He had recently been crowned Chess Champion at school and had been presented with a trophy. Although Ethan had to live with his allergy to peanuts and asthma, he had always just got on with his life and not let it affect him. He would always check the labels on food or ask first before eating anything. He was responsible with his adrenaline auto-injector and carried it with him where ever he went, which he knew was important. Ethan will always be with our family and within our hearts and has left a forever long lasting memory of a boy who was unique, gentle and kind. An important message for all sufferers of allergies out there in our communities is that you need to be vigilant in what you eat. Carry your adrenaline auto-injectors with you at all times because it may save your life. Risk assess those products that say MAY CONTAIN NUT TRACES. Always enquire and reiterate that you have an allergy at restaurants and eateries.

Volunteer conference In September 2012 we held our very first conference for Anaphylaxis Campaign volunteers or potential volunteers at the Holiday Inn in Guildford, Surrey. The event was designed to offer support and up to date information for those people who are able to give a small amount of time to help with our work across the UK including running support groups and raising awareness locally. In total, 30 people attended the event from all over the country and from afar afield as Manchester and the West Country and we had a good balance of parents of allergic children and adults who live with allergy themselves. Those who attended were able to listen to talks from Dr Helen Brough Clinical Lecturer in Paediatric Allergy, King’s College London and Guy’s & St Thomas’ Hospital and Rene Crevel from Unilver as well as the Anaphylaxis Campaign founder David Reading OBE. There was also a session on how to run a successful support group which was very well received and has resulted in an increase in groups being held across the country in 2013. With the 2012 conference being so successful we are planning to hold a further event in Manchester on 5th October 2013. More details will follow but in the meantime if you are interested in volunteering please contact mandy@anaphylaxis.org.uk.

Outlook No. 53

21


fundraising

News

Our Cover Story Orange Wig Day 2013 The third annual Anaphylaxis Campaign Orange Wig Day is fast approaching! On 17 May, we’ll invite our supporters to raise awareness of severe allergies by donning very stylish orange wigs for the day. We’ve had people wear them to work, children wore them to school, a group of supporters wore them in a busy restaurant and someone even taught a martial arts class wearing her wig! We also were pleased to supply wigs to the doctors and nurses at several hospitals last year which was tremendous for raising awareness. We have more and more people participate every year and this year we hope to send out 200 wigs! Make sure you get in on the fun when Orange Wig Day 2013 is held once again on 17 May, 2013. Please email carey.ledford@anaphylaxis. org.uk to let us know you’d like to participate.

Golf Tournaments In 2012, the Anaphylaxis Campaign was the beneficiary of the proceeds made from two Golf Tournaments. The first was in West Yorkshire, organised by Stephen Tempest and the Huddersfield Golf Club and the second took us international to Spain where Stuart Harvey organised a tournament in memory of Tony Morgan. Together these tournaments raised over £6500! We would really love to include golf tournaments in our annual fundraising plans. Do you have any experience with golf tournaments and have some time to devote to helping us host one of our own? Get in touch with Carey either by phone on 01252 893 860 or email on carey.ledford@anaphylaxis.org.uk if you think you can help.

22

Outlook No. 53


Meet our London Marathon Runners Jason Stokes I’m 23 years old, a registered nurse and soldier in Queen Alexandra’s Royal Army Nursing Corps. I have been in the Army for over 7 years now since joining at 16. Prior to nursing I was a trooper in the Household Cavalry Regiment (the armoured reconnaissance side, not the horse riding ceremonial side). In my spare time I like to kayak, play guitar and ride my motorcycle. I am running for the Anaphylaxis Campaign to support their on-going efforts, and to thank them for the work done so far, and most importantly, I run for my wife. She has a condition called mast cell activation disorder. This means that her allergies can change constantly to anything with histamine in it, resulting in both anaphylactic and anaphylactoid reactions, sometimes spontaneous. At worst she had a airborne allergy to yeast particles resulting in numerous reactions resulting in emergency treatment being needed. My last event for the Anaphylaxis Campaign was the Wokingham Half Marathon in 2012. I would like to say good luck to all those who are running and a thank you to the Anaphylaxis Campaign for both this opportunity and all the work they are doing. To support Jason: http://uk.virginmoneygiving.com/JasonStokes

Debbie Timms In 2006 I suffered a torn Anterior Cruciate Ligament (ACL) playing sport and the world that I had always known suddenly changed. I was informed by my consultant that if I ever wanted to play sport again then I would need to have a reconstruction. Following two years of hard rehab I was finally able to run again. Competitive sport was out of the question as my confidence was low and I didn’t want to get injured again. So I took up running. Nothing serious but I needed a goal. I ran the 2012 London Marathon, and fulfilled an ambition that had been a dream of mine for many decades. This year however I am running for the Anaphylaxis Campaign because I suffer from Exercised Induced Anaphylaxis and because in June 2012 a good friend of mine lost his young son, Ethan Thomas, to a nut allergy attack. This was a devastating incident that brought my condition and that of thousands of others to the forefront of my mind. If you are in London on the 21st April, 2013 and you see an orange top with ‘Timmsy’ on the back plodding past you then, shout out as loud as you can because every shout spurs you on.

Pia Asare I’m a busy working mum of two boys (10 and 12 years old) and it’s a real challenge to fit my training into already hectic days. However, what spurs me on to train for my fourth London marathon is that my son, who has a severe tree nut and peanut allergy, asked me to run this year to raise money for the Anaphylaxis Campaign because he wants a cure to be found so that other children don’t have to live with this condition. Raising money for this cause is therefore very close to my heart and thinking about it will keep my going on the day. I never find it easy, but the support I get from spectators carries me through and knowing that I’ll be doing some good will also inspire me. To support Pia: http://uk.virginmoneygiving.com/PiaAsare

Christianna Thatcher-Gray I am a mother of three, a Pilates/Personal trainer with a medical history relating to major back surgery in 1998 consisting of 4 pins, 2 cages, disc removal and fusion of my lower back which means running of any type is a real challenge. I was a professional dancer but had to cut my career short through the injury to my back. My reason for choosing the Anaphylaxis Campaign is because my son, Ashton, is a nut and food allergy sufferer. We first experienced this problem before he started school in August 2008: we had two very scary incidents where we did not know what was occurring. We really struggled to get him diagnosed due to overly dismissive doctors and waiting lists but eventually we had him formally diagnosed and he is now under Addenbrokes Hospital in Cambridge and he attends annual checkups. I have always wanted to run the London Marathon by a certain age (you can guess!) and gaining a charity place with the Anaphylaxis Campaign is such as positive way to raise money and awareness. What has surprised me during fundraising is the lack of awareness that people have of nut and food allergies so already I feel we are increasing the profile. I look forward to meeting the other runners on race day!! Good luck to all!!

And for those others that are running: Remember ‘Happy Feet’ !

Outlook No. 53

23


Ian Brant

won’t be pretty and I won’t be smiling…………but it will definitely be worth it!

When my son, Fraser, was diagnosed with a peanut allergy 18 months ago I decided it was time that I raised some money to help fund research and raise awareness. I have always wanted to attempt to run the London Marathon. My training is going well, having just completed a half marathon distance. I am however learning that the Marathon is less about the 26.2 miles on the one day in London and more about the thirty plus miles (and circa six hours) per week of hard training. We manage Fraser’s allergy by avoidance. Even at the age of three he understands that peanuts will make him poorly and that he must ask mummy and daddy if he is okay to eat certain foods. In the event of a reaction Fraser carries a medpack (piriton and jext pens) everywhere he goes. To sponsor Ian: http://uk.virginmoneygiving.com/IanBrant

Robert Kovach I am supporting the Anaphylaxis Campaign so that they can continue their important work in supporting those with life-threatening allergies. I am increasingly saddened by how challenging the prepared-food & catering industries make it for people with life-threatening food allergies to engage in what should be fairly safe, simple and straightforward activities. Being able to enjoy an ice-cream at the Theatre, eating a meal on an airplane, enjoying the candy cane from Father Christmas, or going to a pizzeria for a friend’s birthday....... these do not have to be activities where one needs to be ubervigilant and hyper-sensitive. However, as the ‘product alert’ SMS messages The Campaign regularly send inform us, we need to be extra careful even when nuts aren’t on the label/recipe or there is no logical reason why the product should contain a particular allergen (I am personally amazed at how many things contain sesame......). My daughter was diagnosed with multiple food allergies on her 1st birthday. We have learned to cope and she has been an absolute star at being more mature, flexible and understanding than a 10 year old should have to be. The Anaphylaxis Campaign has been there to support us. So, it is my pleasure to support them as they supports her and all those with similar conditions. When you see me on Marathon Day I won’t be fast, I

To support Robert: http://uk.virginmoneygiving.com/RobertKovach

Amy Lack I am a 25 year old with a severe nut allergy which I have been suffering with since Guy Fawkes night at the age of seven when I ate some ice cream with chocolate covered peanuts. I play ice hockey and am currently working as a snowboard instructor. Not long after finding out about my nut allergy we became members of The Anaphylaxis Campaign who have provided my family and me with lots of useful information regarding allergies. Running is something I enjoy doing outside my other sports and have completed a number of 5K runs and a half marathon. The London Marathon is something that I have always wanted to run and when the opportunity came up that I could apply to run for The Anaphylaxis Campaign I jumped at the chance and was lucky enough to get a place to run. To support Amy: http://uk.virginmoneygiving.com/AmyLack

John English I turned 50 at the end of January and am having a peculiar mid-life crisis! For me it is not fast cars and loose women but running and cycling. Having played football up to my late 30s but very little exercise since, as time catches up on my joints I am now trying to prove to myself that ‘I can still do it’. The London Marathon is the ultimate test of that. I am really pleased to be running for The Anaphylaxis Campaign. My 7 year old son, Joseph, is anaphylactic with cows’ milk and dairy products. He is also severely allergic to many types of fish and to a lesser extent some nuts and seeds. The Anaphylaxis Campaign has provided fantastic support to our family in the management of Joe’s allergies and, most importantly from Joe’s point of view, sending him milk–free chocolate Advent calendars each year. To support John: http://uk.virginmoneygiving.com/ JohnEnglish1

WWW.ANAPHYLAXIS.ORG.UK


Anaphylaxis Outlook 53