Recog­nis­ing the dan­ger of ana­phy­laxis

Much more se­ri­ous than to­day’s ubiq­ui­tous ‘al­lergy’, the con­di­tion is ex­tremely de­bil­i­tat­ing and can be life-threat­en­ing

The Irish Times - Tuesday - Health - - Health Nutrition - Ar­lene Har­ris

In July 2016, 15-year-old Natasha Ed­nan-Lap­er­ouse boarded a flight at Lon­don Heathrow air­port af­ter eat­ing a sand­wich she had just bought in Pret a Manger.

Ana­phy­lac­tic to sesame, the teenager as­sumed the baguette was safe to eat as there was noth­ing listed in the in­gre­di­ents which would have posed a dan­ger to her life – how­ever, sesame was baked into the bread and she went into car­diac ar­rest and trag­i­cally died af­ter the flight landed in France and she was rushed to hos­pi­tal.

A few weeks ago, the food com­pany of­fered its con­do­lences and re­gret while agree­ing to change its la­belling pol­icy to en­sure all pro­duce shows ex­act in­gre­di­ents. This was too lit­tle too late for Natasha’s fam­ily, who have been left ut­terly dev­as­tated by their loss.

And as the par­ent of some­one with ana­phy­laxis, I also live in fear of this fate strik­ing my own fam­ily. My el­dest son was con­firmed ana­phy­lac­tic to tree nuts when he was seven. It was a bolt out of the blue and we were ini­tially paral­ysed with shock as the thought of how we would pro­tect him from some­thing as in­no­cent as food through­out his life was over­whelm­ing.

We were told to adopt the pol­icy of “no EpiPen, no food” and try to carry on as nor­mal, but as Natasha’s griev­ing par­ents know only too well, some­times the jab of a pen is too late to save a life – which is why it is ab­so­lutely cru­cial that all in­gre­di­ents are listed so peo­ple can see what they are buy­ing and are not, as the teenager’s par­ents felt, play­ing Rus­sian roulette with their child’s life.

As well as this, many ex­perts be­lieve the grow­ing num­ber of peo­ple who claim to have al­ler­gies is di­lut­ing the se­ri­ous­ness of con­di­tions such as ana­phy­laxis, which only 1-2 per cent of peo­ple have.

These days, ev­ery class has a child who is al­ler­gic to some food stuff, ev­ery din­ner party con­tains at least one guest who can’t eat gluten, dairy, nuts or some­thing else – but more of­ten than not, the most prob­lem­atic re­ac­tion these peo­ple will ex­pe­ri­ence is nau­sea, a rash and some dis­com­fort.

Al­lergy ex­pert Dr Paul Car­son be­lieves that be­cause so many peo­ple are “al­ler­gic” nowa­days, the dis­tinc­tion be­tween feel­ing un­well and hav­ing a life-threat­en­ing con­di­tion has been blurred and the pub­lic has no idea how dan­ger­ous ana­phy­laxis ac­tu­ally is and don’t re­alise it can kill – in a very short space of time.

Fad­dish

“I do be­lieve the abuse of the word al­lergy re­duces the im­pact of se­ri­ous al­lergy is­sues like ana­phy­laxis, which is an ag­gres­sive, life-threat­en­ing, to­tal body al­ler­gic cri­sis where the suf­ferer has mul­ti­ple or­gan in­volve­ment in­clud­ing cir­cu­la­tion col­lapse, swelling through­out breath­ing tract ob­struct­ing air­way, skin swelling and the emo­tional sense of im­pend­ing doom,” he says.

“Causes of a true al­lergy are not to­tally clear but there are a lot of peo­ple who say they are al­ler­gic to foods and re­ally are not – it’s be­come a bit fad­dish.”

Dr Car­son, who runs Slieve­more Clinic in Dublin, also says too many peo­ple are be­ing given EpiPens or equiv­a­lent un­nec­es­sar­ily. “I feel that adren­a­line pens are be­ing pre­scribed with­out a proper and firm di­ag­no­sis – of­ten for medico-le­gal rea­sons – as in doc­tors cov­er­ing their own backs,” he says.

This is very bad news for peo­ple who are ana­phy­lac­tic (par­tic­u­larly as there is cur­rently a world shortage of adren­a­line pens) and Dr Car­son ad­vises suf­fer­ers to be ex­tra vig­i­lant in the man­age­ment of their con­di­tion.

“If a food­stuff doesn’t have in­gre­di­ents listed, don’t risk eat­ing it,” he ad­vises. “The on­set of ana­phy­laxis varies from an im­me­di­ate re­ac­tion [within sec­onds] and even up to one or two hours later de­pend­ing on the sever­ity of the al­lergy, how much of the al­ler­gen was con­sumed and other fac­tors such as ex­er­cise or al­co­hol con­sump­tion.

“Then even if the auto-in­jec­tor (EpiPen) has been used, the pa­tient must get proper med­i­cal at­ten­tion ASAP. This is based on ‘sec­ond wave’ ana­phy­laxis at­tacks in those who are exquisitely al­ler­gic [mainly chil­dren with eczema, al­ler­gic rhini­tis and asthma] and may need more than one in­jec­tion or need more in­tense sup­port­ive mea­sures such as IV flu­ids.”

There is per­haps good news on the hori­zon for those at risk of vi­o­lent re­ac­tions to peanuts. Ac­cord­ing to re­sults pub­lished in the New Eng­land Jour­nal of Medicine in Novem­ber 2018, more than two-thirds of chil­dren on a trial for a new im­munother­apy drug can now safely eat peanuts. The drug, AR101, de­sen­si­tises peo­ple with a peanut al­lergy, with Ir­ish chil­dren in­volved in the two-year trial.

Die within min­utes

Peo­ple with ana­phy­laxis, like my son and tragic Natasha, can die within min­utes of in­gest­ing an al­ler­gen and this is the mes­sage which needs to be got across – par­tic­u­larly as a trawl through the com­ments sec­tion on ar­ti­cles on the topic al­ways con­tains an alarm­ing num­ber of taunts from peo­ple who gen­uinely be­lieve the con­di­tion is just an at­tempt at at­ten­tion-seek­ing. They fail to see how their lives should be dis­rupted (by not eat­ing nuts on a plane for ex­am­ple) just to sat­isfy some­one else’s lit­tle quirks.

This makes an al­ready de­bil­i­tat­ing con­di­tion even harder to man­age.

Anne Walsh was so wor­ried about the lack of in­for­ma­tion about ana­phy­laxis that she set up al­ler­gylifestyle.com in a bid to make peo­ple aware and also to pro­vide much-needed ad­vice and sup­ports.

“I felt there was very lit­tle sup­port and prac­ti­cal in­for­ma­tion avail­able re­gard­ing life-threat­en­ing al­ler­gies,” she says. “I found it dif­fi­cult to get prod­ucts to store pens cor­rectly (adren­a­line has to be kept at room tem­per­a­ture) or to alert oth­ers to the fact that my daugh­ter has se­ri­ous al­ler­gies. So in 2013 I took a ca­reer change to bring to­gether all the prod­ucts you would need if di­ag­nosed with ana­phy­laxis, asthma or al­ler­gies and to share prac­ti­cal in­for­ma­tion with par­ents.”

Her 14-year-old daugh­ter is ana­phy­lac­tic to peanuts and af­ter wit­ness­ing her ex­pe­ri­enc­ing a se­vere re­ac­tion, Walsh, who used to work as a biomed­i­cal sci­en­tist, has also cam­paigned to en­sure all the restau­rants in her home­town of Castle­bar keep a stock of life-sav­ing EpiPens on-site in case of emer­gency.

“These restau­rants can now hold adren­a­line auto-in­jec­tors on site un­der the new leg­is­la­tion and could re­spond to a se­ri­ous al­ler­gic re­ac­tion un­til med­i­cal as­sis­tance is ob­tained,” says Walsh.

“It makes an enor­mous dif­fer­ence to a fam­ily event to know you can eat out safely and we feel the al­lergy com­mu­nity will ap­pre­ci­ate and sup­port restau­rants in­vest­ing in staff train­ing.”

Anne Walsh with her daugh­ter Ais­ling, who is ana­phy­lac­tic to peanuts.

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