Patient spotlight: Karolien Verheyen

This month, ahead of Rare Disease Day (29 February), we spoke with Karolien Verheyen, a patient advocate and member of our Sarcoidosis PAG.

Tell us a little bit about yourself and your background

I was born in Belgium where I studied arts, music, youth work and got a teaching qualification. After college, I moved to Ireland where I lived from 2000–2011. During this time, I was diagnosed with sarcoidosis in 2007 whereupon I started studying again. I graduated with a Master’s degree in biomedicine in 2021 for which I wrote a thesis on sarcoidosis and quality of life.

I now live with my partner and our two dogs (one adopted from Co. Kerry, Ireland) in the German speaking part of Belgium, where I teach ethics, music and arts. I love visiting museums, reading and walking with the dogs. I hold exhibitions of my photos and paintings, and together with my partner we play Latin rhythms on conga, bongo, and small percussion instruments.

How did you get involved in patient advocacy?

After my diagnosis I wanted to understand my body in relation to my illness better and to be able to better communicate with my doctors. It was a challenging but worthwhile journey to study science with a UK university and write a Master’s thesis! I thought of studying medicine but although I passed the entrance exams, I was too sick and not financially able to study medicine.

While in Ireland, I set up a support group in Kerry where we had bi-monthly meetings in Tralee, Co. Kerry, which included presentations on sarcoidosis from Professor Seamas Donnelly.

My journey with sarcoidosis also brought me back to my homeland and from 2017–2021 I worked at UZ Leuven as a Research Coordinator on an international project around sarcoidosis and quality of life. Then, a year and a half ago I set up, together with Patienten Rat und Treff, a sarcoidosis support group where we have regular meetings.

I am happy now to be able to give advice and support where I can and to tell people about sarcoidosis as a rare disease.

Can you tell us a bit about what it is like having a rare disease?

Having a rare disease has been tough and challenging but also interesting and versatile. I was, and still am, tired and have to keep an eye on my energy and stress levels. I pushed myself a lot and kept going even in times where somebody else would rest. I did not want to listen to my body and was stubborn. I told myself “I am not sick”, until my body told me differently.

I became very interested in mental health and sarcoidosis. I see that a lot of people suffer in silence because their friends, family and colleagues don’t understand the extent of the disease and how it can affect a person. Sarcoidosis, as a rare disease, is not well-known and that comes with a lot of disadvantages. My advice is to find the right doctor, one who really hears you, and to tell your family and friends how you are feeling. Finding a professional to talk to might also be a good idea as you can then share the burden.

Don’t be ashamed of being sick, it’s a whole new episode in your life where you will meet new sides of you that you didn’t know. It will bring stress but also a richness. Therefore, slow down and focus on the now. Your body is telling you something. Listen to it and take time to rest.

What would you say to someone thinking of getting involved in patient advocacy?

Do try it and get help in setting up a group but mind your boundaries. When giving advice and helping people it is important to know that you are not a doctor and are giving advice as a ‘peer’. You can point somebody in the right direction, comfort them and refer them to the correct specialist when needed. There are courses available on peer counselling that may be helpful to get you started. Keep an eye on your energy levels and abilities. Help and support people but not so much that you cannot cope anymore. Your own body and family are very important!

Tell us a little bit about your song the Sarcoidosis Anthem and what inspired this?

I was taking the corticosteroids as part of my sarcoidosis treatment, and I was feeling all possible side effects of it. I am creative and wanted to make a bit of tongue-in-cheek song where I can laugh with myself and the illness. It has an up-tempo rhythm but with serious lyrics, which gives it a bit of a Monty Python feel, I think. I wrote the lyrics, played the drums (New Orleans swinging funk rhythm), sang and recorded it myself. I had a lot of fun doing this!

The Sarcoidosis Anthem - Karolien Verheyen