Interview with Mikaela Odemyr, Chair of the ELF Patient Advisory Committee

Mikaela Odemyr is a patient advocate for asthma and allergies. She has been a member of the ELF Patient Advisory Committee (PAC) for one year, representing the European Federation of Allergy and Airways Diseases Patients’ Association (EFA). In August 2020 she was voted by the other PAC members to become the new PAC Chair.

We asked her to tell us more about her background and what she hopes to achieve as the new Chair.

Can you please tell us a little bit about yourself and your background?

I am a mother with three children; they each have asthma, allergies, or both. I have been working for a non-profit organisation for 23 years and own a business that specialises in wellbeing. I am the second vice-president of the Swedish Asthma and Allergy Association and have been for seven years. I have also been the president of EFA for five years.

I live in the North of Sweden and love getting outside to forage for mushrooms and to go skiing!

What made you decide to apply for the role of ELF PAC chair?

I love working with people and especially for patient associations – my term at EFA is ending soon so this will be the perfect new challenge.

When ELF approached me about applying for the role, I was very flattered. I thought about the role and considered whether I had the time and skills to do the best job I could. I am looking forward it!

What are you most looking forward to in the role?

I am looking forward to getting to know the patient representatives, working more closely with organisations in the ELF network to share best practise, and encouraging more people to get involved with ELF. I come from an organization that is more than 60 years old, and I understand that sometimes, new organisations can need guidance and support.

I am also looking forward to working with healthcare professionals, we often have the same goal but not always same view on how to get there. That relationship is important, we learn about them, and they learn about us. It is so important to have both sides, we can achieve a lot more by working together.

What would you like to achieve in your time as PAC Chair?

I would like to develop our connection with the MEP lung health group, it will be good work with the high-level group; I hope we can work with them to make healthcare more equal across Europe. 

Lung health is now a more central topic due to COVID-19, so we can use this as an opportunity to further the interest in lung health and reach out to new organisations to develop relationships with.

Can you tell us one interesting fact about yourself?

15 years ago, I was diagnosed with cancer, it was a tough period of my life. But I learnt to really focus on the positives and not the disease. I used the same mindset with my children and their conditions and allergies. I taught them that they are not their disease, they have a name and a life.

I recently published an allergy friendly baking book with my daughter. She took the photos, and I developed the recipes, it is great to be able to show people what you can do with food rather than what you cannot.

For the last 15 years, I have also been running a camping trip for children with allergies and asthma and their families. It helps them to get out into nature and enjoy many of the things they thought they could not do because of their condition. It teaches them how to manage their condition and get the most out of life.  It is so important to meet others in the same situation and know you are not alone.

Is there anything else you would like to add?

I am so grateful to have this opportunity and the trust you have put in me!

I think at this time, it is important to stay safe and focus on the good things in life – keep in touch with your loved ones. Do not forget them.

Associations like ELF are now even more important, we need to empower patient organisations to help their members. Many organisations are putting things off until next year, I encourage them to not put things on hold – people are lonely, and they need their organisations, so please reach out to them, hold events online or simply call each other.