Meet Habba - "learning the hard way"

Introducing Habba, secretary of the Luxembourg Allergy Network and one of its founding members. Habba is a mum of two and has already been on a long allergy journey with her son, who suffers from multiple allergies as well as asthma.

What made you look for a support group, and how did you find out about the group?

My son age 8 at the time, 21 today, had been attending Maison Relais in our commune for many years and started to refuse any food served for lunch because it made him feel very ill. MR advised us to have his allergies tested again. It turned out that he had developed more and new allergies than those we already knew about and that they were considered severe. We did not know anybody with food allergies among our close friends or family and were convinced that our son would simply outgrow his allergies.

 

Nicky had made herself known in the commune and at the MR and the director informed me about her meetings. I spotted one of her invitation leaflets to an informal meeting in our village and went for my first meeting. 

What were your main challenges dealing with your son’s allergies back in those days? 

First of all, it took far too much time to have my son properly diagnosed. We had to ask the pediatrician repeatedly to find out what was wrong with him. Secondly, there was no systematic follow-up on the allergies that were diagnosed at an early stage. After the severe multiple food allergies had finally been confirmed by CHL (Centre Hospitalier Luxembourg), MR refused to let my son continue eating there for lunch. He was not even allowed to bring his own food. His father and I therefore took turns in leaving work at lunch time to cook for him. 

Our son was probably one of the first children to have a PAI (Projet d'Accueil Individualisé) for allergies. The follow-up and auto-injector training by the school nurses was not properly in place and I usually had to inform all the teachers myself. I often found it hard not to receive any answers or acknowledgments when I wrote to the schools or individual teachers about his allergies, but luckily there were also teachers who understood and one of them even proposed to have some training with the nurses at CHL in her own free time.

We also cooked all the meals in advance before he left on school trips. If the class went to a restaurant, we had to check the menu and contact the restaurants in advance. We spent a lot of time at the hospital for food challenges and spent many years doing different desensitization programs. I now wished we had been offered to do some of them at an earlier age. 

How did the support group help you?

I was amazed how much everybody knew about food allergies and I immedialty felt welcome and understood by the group. It turned out that Nicky´s son shared most of my son‘s food allergies. She was able to guide me through everything she knew and gave me very useful information. I knew little about allergen „families“ or cross allergies, like peanuts and legumes, dustmite- and shellfish allergies and contamination; how easily allergens can accidentally be spread onto otherwise „safe“ food and that opening up a peanut bag or Erdnussfips in the same room as the allergic person might trigger a severe reaction or asthma. I felt ashamed not having taken my son‘s food allergies more seriously and for not having informed myself enough about them.

“The support group was never judgmental, they all admitted to having made mistakes at some point. It was good to be able to talk about our experiences and share”

In 2015 you became an Asbl – what was the motivation for you to take this step, and how did you achieve this?

I quickly felt the need to create more awareness about allergies, attend conferences on the newest developments and support others. Since I am born and raised in Luxembourg and speak the official languages, I thought I could make myself useful to LAN by approaching the local authorities and Ministries in order to cooperate with them. Nicky and the other founding members had wanted to create an Asbl for a long time but they were lacking resources. Finally, with the help of a few additional members and mutual encouragement, we just sat down and took it step by step. 

The doctors had also strongly encouraged us to seek standing as an association in order to protect our children.

“As a parent”, one of them said “you have the duty of care but also the duty to protect your child!”

The founding members also felt that through our experience, actually living with allergic children, we had knowledge that is important to share. There is not enough understanding when it comes to severe allergies, as by their nature allergies come in all kind of shapes. People that are not directly concerned, either tend to undermine the seriousness or feel completely overwhelmed and therefore prefer to exclude the child rather than learn how to include. There is still a lot to be done to improve the lives of allergic people and their families! Access to specialists, immunotherapies at an early age are for instance vital to prevent severe and multiple allergies. 

“This is what I have learned the hard way!”

Your son in now grown up, how does he deal with managing his allergies? And how does it affect you that you can no longer fully influence his allergy management?

Luckily, my son enjoys cooking. He is also well trained to read all the labels and never leaves home without his emergency kit. In my opinion, he is not careful enough when choosing restaurants and it makes me nervous. I guess that with age, the quantity of allergens tolerated increases slightly because he is taller and weighs more, but maybe also thanks to the desensitization he has done. We are currently trying to find out if that can be confirmed through blood tests. His asthma has nevertheless not improved.

When he travels with his music orchestra from university, it is sometimes difficult for him to eat, because he needs a fridge and preferably an oven, stove, or microwave to heat up the food that he brings. For groups, they normally foresee buffets which is too risky for him because he has multiple allergies, and the ingredients are not labelled or might be contaminated. He does not always have time to fetch or order food he can eat in a new place. The dust, pollen and pet allergies can also unexpectedly become an issue in a new environment. When he was home, I could help preparing and planning these trips ahead. The allergies still affect him a lot and he feels quite isolated or excluded sometimes.