the allergy show olyimpia, london,UK

Posted on: Mon, 06/28/2004 - 10:06pm
williamsmummy's picture
Joined: 03/26/2002 - 09:00

The anaphylaxis campaign (UK) had a stall at the allergy show, and David Reading the campaigns founder gave a senimar on the campaigns work and history.

I think that most of the volunteers that helped thought that the allergy show would bring in rather a large supply of ........shall I say it? NUTTERS.
But no, the reverse was true.
Some of the stall holders had rather dodgy business , some with large signs proclaiming to 'cure' anaphylaxis .

And sad , but not unexpected , the food on offer for tasting was full of nuts, we even had a stall next to us handing out biscuits with chopped nuts, there business was selling gluten free products, and they all seem to think nuts are a good idea!

The shock was that we were 3-4 deep in parents and adults with severe allergies, trying to either get some rare advice and help, or just to join.
Our membership is around 7-8000 now, and growing.
It was wonderful for me to meet the office members of the campaign, people I have talked on the phone for years, and recognised their voices, rather than their faces !!!

There was no time to draw breath, or at times difficult to dash to the loo!

But the stories and the people I met will stay in my mind for a long time.

The parents with a young child who had severe egg and nut allergy, which had led to allergy specialist insisting that the child had MMR innoculations at hospital, just in case, but for some reason the child didnt have any epi-pens.
Many docs think that parents control the meals a young child has, however as I watched this child darting around , crawling on the floor , near the stall next to us that was handing out nut biscuits, it seemed unbelievable to me.
(But that is my personal feelings as a parent.)
These parents told me that they were happy to accept that there doctors advice and added that son had always had slow reactions . I told them about medic alert braclets, how they might be useful in an emergency, and if they put it on now he will get used to it and not pull it off and discard it at a later age. And of course if their child was one of the lucky 20% to grow out of nut allergy, they could take it off.
They left and told me that they would give what I told them serious thought , and i loaded them with an armful of infomation!

A young man of about 18 told me that he had an epipen and asked me how to use it?. I gave him the leaflet/ALK phone number out of my sons spare epipen ( in my handbag) and told him to buy a trainer and contact the nurses at his doctors surgery , as they were most likely to know , rather than his GP who had admitted that he didnt know how to use one!

A young woman in her twenties clinging on to the arm of her mother, came to our stall, her face covered with a mask. Her reactions to chemicals , like perfume , and to some foods had led to her spending lots of time in hospital with anaphylaxis.
This girl couldnt talk for long, her asthma worsening, ( asked if I was wearing perfume! , ooh the guilt!!!) and the fact that there where a lot of nut products around was making her feel worse.
I pressed the campaigns leaflets in her hand, and agreed that she seemed to have recieved the best care that the UK can offer, and so far no one had come up with anything that she had already tried. Brittle asthma is one of lifes nastys, throw in anaphylaxis you dont seem to have much of a life. A sad story.

A single parent , who had traveled all the way from scotland , just to come to the allergy show and talk to us and catch a few experts on allergy at the seninmars , talked with me for ages, (she had borrowed the train fare and B&B money from friends, she was on benifits with three children.)
There are NO, allergy services in Scotland.
Her daughter had a long list of alleriges as well as the usual asthma and ezcema.

A woman approached me with a loud cry of 'SARAH, HELLO'!!! I hadnt a clue who she was , she pointed out my badge and then introduced herself , a parent who I had e-mail contact for a year and of course never had met her!
I met the mother who started my parent support group years ago, she had to move away to Kent during our first year , and it was nice to catch up with her!
The first day, a friday was hetic to say the least, we began to run out of leaflets half way through the morning.
David made some frantic calls to get some more delivered !

Some nice looking chaps approached David, and after a brief chat , he agreed to be interviewed for a documentary, I did a brief interview as well, giving a few brief tips on schools and allergy and William. But didnt get a chance to ask when this would be shown, or a contact number from them, as this was conducted inbetween lots of parents trying to get to talk to us.
Still, not too unhappy about that , as went home and noticed that I had not one but two HUGE HUGE SPOTS on SIDE OF NOSE!!!
Am hoping that it all ended on cutting room floor.

Some canadians overheard my conversation with another parent, I was talking about my attendance on the consumer pannel at a conference for all major food producers and supermarkets ( the food and intolerance confererance) they spent a brief time talking to me and wanted to have contact with anaphylaxis canada . Who I dont know much of , did mention FAAN, but wished I had web address, or phone number to pass on, still these men were very interested in trying to sort out a similar conferance in canada. They even came back to me on saturday to talk about it, I promised to put them in contact with the organisers etc.
(I hope that they do something, as with most things, if you want something done, do it yourself! )

I left on saturday , tired and developing a sore throat from constant talking ( which is saying something for me!) and aching feet.
stumbled on tube home, which I hate, hate ,hate.Nothing natural about being underground in a metal tube!

But still am happy to go next year, someone pointed out that the campaign could fill all the seminar rooms simply giving out allergy advice and suggested that one on schools and day nurseries would be a good idea.
I am not sure that I will thank Hazel for that, really. But if promised a shot of whiskey , would do it!!!

The day made me feel lucky about the few allergy problems that william does have, and weary at the real understanding of how much more is needed to be done.

sarah ( thanks cindy for prodding me to add this to peanutallergy!)

Posted on: Tue, 06/29/2004 - 6:13am
Anonymous's picture
Anonymous (not verified)

williamsmummy, it must surely feel good in some way to be a part of what you are doing for people.
Here, in Canada, we have Anaphylaxis Canada, and I do know that they have certainly helped me in the past with different difficulties I have encountered. The only problem I have with them is that they are based in Toronto so if you want to be trained or really want any connections, you have to either go to Toronto to be trained or live there (or in the GTA).
I had thought, through this past winter, about going to Toronto for the training simply so that I could have the Anaphylaxis Canada "seal of approval" (if you will) on my head, which would give me more standing in a community than simply being a PA parent.
Perhaps something to look toward doing when I do move back to Toronto.
Kudos, kiddo! You are making a difference, not only here at but in the *real* world as well.
I thought it was important that you post about your experience so that you could show other PA parents that they are not alone in not being educated by their doctors and that there is help out there.
I also thought it was important for any members we have that would have access to the Campaign in England.
Best wishes! [img][/img]

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