Before going to EAACI in June I had never even heard of the European Anaphylaxis Task Force but it does indeed exist and its aim is to establish a patient driven stakeholder platform across Europe.
Frans Timmermans is the President and CEO of this task force and is based in The Netherlands. I attended a seminar the day before which Frans chaired which brought together all the Patient Organisations in one room to share learnings and discuss plans for the future, including charities, clinicians, nurses, pharmaceutical organisations etc. The Anaphylaxis Campaign and Allergy UK are members, as are their counterparts in countries across Europe. It was interesting to see that the same issues and challenges seem to be faced across the continent with the main difference being, different allergies seem to be more common in different countries.
I met Frans in the quiet calm and tranquility of the press room and we chatted for nearly two hours. I wanted to find out what drove him to get involved with the task force; it was a similar story to why charities have been set up in most countries, he had direct experience of the terror of anaphylaxis in his own family.
Frans has four kids and one, his youngest daughter had breathing difficulties as a child. She inadvertently ate a peanut, dropped on the floor accidentally at a party and had an anaphylactic attack. Like many people this was a new experience and Frans felt he needed to do more than just manage his own situation and keep his child safe. So he set up the Dutch Allergy Association and learnt much from The Anaphyhlaxis Campaign, already established by David Reading in the UK.
Frans has strived to set up the GA2LEN INITIATIVE on ANAPHYLAXIS (GAIN) which aims to share an elearning programme for patient organisations. He just wants to share information openly, help educate people who feel lost, alone and frightened after diagnosis and works hard to build awareness. Most importantly, any information that is made available on the Dutch Allergy Association website is made available to everyone. He believes open data is far more powerful if available to everyone, even people who may feel they cannot afford or do not want to join the society.
Get healthy and stay healthy
His biggest piece of advice to anyone who is at risk of anaphylaxis is to keep healthy. More so than anyone else, and with well controlled asthma.
The main challenges across Europe
- Educating society
- Raising Awareness
- Food Service industry e.g. leisure industry, cafe’s, restaurants, school canteens
- Better guidance for clinicians
Nothing new here, the same challenges we face here in the UK.
But most of all, Frans wanted people to realise this…
You do not ‘have’ anaphylaxis you are merely at risk from anaphylaxis.
You do live with restrictions, but your life is not restricted.
It may feel like it is, but once you’ve got control back of your life and understand what is safe for you there should be nothing stopping you from enjoying a full life.
There are of course patients with many multiple allergies who do find life hard, some who cannot consume any food and are left with liquid feeding. What answers are there for them?
We all need to understand how best to live with our situation and how to communicate to others.
The fear many people feel, especially parents can be overwhelming. Working out how to deal with the huge unmet need for support, counselling, guidance and continued learning is a huge challenge.
We also discussed the problems with allergy testing which are fraught with confusion. There is no real true allergy test. A positive test result does not necessarily mean you have an allergy to that food or substance. However when assessed with medical history an allergy diagnosis can be made. This is confusing for patients and not ideal. It would be great to have a reliable test which said one way or another whether someone was allergic or not.
So the main message I got from this interview was that huge efforts are being made in science, in hospitals, by professional allergists and by the charities who support us after diagnosis. Make the most of the resourses available to you. Join your local Allergy Group, get involved, share, learn and develop. Build your confidence so that you can also become an ambassador for allergy awareness.