The Irish Anaphylaxis Campaign was set up over 10 years ago when Chand and Anneli Kohli couldn't find any support for their daughter's potentially fatal allergy to nuts.
"Our first aim was to raise awareness about anaphylaxis. My view is that no-one need die from food-related anaphylaxis as there is a life-saving drug available. The problem is that some people don't know about it," explains Chand Kohli.
Anaphylaxis is a severe and often fatal form of hypersensitive allergic reaction to certain foods, vaccines, insect bites or latex rubber. The effects include a drop in blood pressure, local swelling of the skin, narrowing of the airways, itching, vomiting and abdominal pain.
People liable to anaphylactic attacks should carry adrenaline for immediate injection to control an attack and then go to a hospital for further medical attention.
The top priorities for the IAC over the past decade have been sending letters to GPs and making contact with media to promote better understanding of severe allergies.
Campaigners also persuaded health boards to include adrenaline pens under the drugs refund scheme. They made contact with schools explaining the need for staff members to be able to administer adrenaline (ie a needle shoots out from the adrenaline pens injecting the required amount once the pen is pressed against the skin halfway between the thigh and the knee on the outside of the leg).
Teachers' organisations now have guidelines regarding how staff members will deal with children who go into anaphylactic shock. "Every September we get a few calls from parents who are experiencing a stand-off situation with teachers unwilling to administer adrenaline should the need arise. Now, what I would like to see happen is a protocol for schools on how to handle all aspects of severe allergies," says Chand Kohli.
This schools' protocol and a campaign encouraging restaurants and food producers to identify all ingredients on menus and in products to prevent the widespread practice of defensive labelling are issues that the Kohli family would like to see new members of the IAC to take on board.
The current committee has organised a public talk on anaphylaxis with the combined aim of informing people of the condition and setting up a new committee to run the support group. "The same small group of volunteers have been running the campaign since it started. Now, we hope this event will revitalise it by establishing a new group of volunteers," says Kohli.
Living with Anaphylaxis is the title of a talk by Mandy East, national co-ordinator for the Anaphylaxis Campaign in Britain on Saturday from 2pm-4pm in the Regency Airport Hotel, Swords Road, Dublin 9. Admission free. For more details tel: 01-2952791.