"You can live a normal life"

"You can live a normal life"

Mattias Lundgren was diagnosed with ankylosing spondylitis (AS) at the age of 25, but had already had symptoms as a teenager. Finding the right medication, being open to his surroundings and listening to his body have been Mattias Lundgren's path to living a completely normal life.

Who are you?

My name is Mattias Lundgren I am 39 years old and I live with my wife and three children. I work shifts at a pharmaceutical company as a mechanical engineer. As life looks right now, it’s completely normal and busy with pick-up, drop-off and leisure activities. In all seriousness, I do not have much time for my own activities right now, and I have to find the time to exercise and to keep a strong and healthy body. 

How was it when you got your diagnosis?

I was diagnosed with ankylosing spondylitis (AS) when I was 25, but it was a long journey there. I was 16-17 years old when I had my first symptoms: I was hospitalized with severe inflammation in the shoulders, knees, hips, ankles and fingers. It was a long process and I missed a lot of school in that period. The doctors thought it had to do with salmonella bacteria so I was discharged when I started to feel better, and life got tougher.

I played a lot of sports at that time:  football, hockey and ice hockey. I had a lot of injury problems but I did not think about it and just drove on. After a couple of years, the severe inflammations started again. I had major hip problems, sought a lot of care, took lots of anti-inflammatories and continued to play sports as usual. To cut a long story short I ended up with a doctor who referred me to a private rheumatologist, but in the end I became so ill I could not walk and was admitted to hospital as an emergency again.. I was finally referred to the rheumatology clinic in Huddinge where I received the help I needed. It is a really good department that I can always contact even with the smallest possible problems. It's a team I'm proud to know.

How was it after you got the diagnosis?

When I was diagnosed, the journey began to find a drug that would work for me. It took a while. I was just in the process of having to replace my hip joint when I finally had the chance to find a drug that suited me, and which caused the operation to be paused. For the past six years, I have felt very well and have not had so many severe relapses. The disease is more in balance. I have had back surgery and received a good exercise program after that, which has also had an effect. My AS only really shows itself as morning stiffness and in other situations where I need to sit still for a long time.

Is there anything that has been difficult?

I grew up doing a lot of sport as I said, and after the diagnosis I discovered I could not do what I wanted to in the same way. I have had to adapt because of my body and it feels boring sometimes. I want to, but my body cannot and then I need to respect it and find things that work.

Professionally, I have had to opt out of training as an excavator operator, which was something I had thought about. But it is not recommended if you have a rheumatic disease due to being sedentary and the work environment. Then I had to change jobs because it was too physically demanding and the work became too much for hands and fingers. It is also tough not to have had symptoms for a long time and then they suddenly appear. It has been a mental challenge, but thanks to very understanding managers, it has been solved by relocating my work when the symptoms have been at their worst.

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How have you and your loved ones talked about your illness?

I feel I am received with open arms when I talk about my illness and how it was before. Now I've gotten better, hardly anyone believes how bad I felt. My family and my childhood friends have been a great support in both the good and bad times.

My mother also has the same diagnosis as me, so of course I suspected before I got my diagnosis that maybe that was what I had. Actually, it was just nice to get a confirmed diagnosis, but I remember it felt hard to tell my mother. But Mom and I have really benefited from supporting each other and sharing both good and bad experiences. It feels great that we have each other. In recent years I have been able to support her in getting the care she needs and finding new ways to feel better.

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What are your golden tips in everyday life as a person with a rheumatic condition?

Share. For me, it has been important to talk and share about how things are. I try to tell someone if I need to take a break because I'm in pain. We have bought a house where we need to build a terrace, and I know I have to take the work a little at a time. I get reminded pretty quickly of my disease if I start carrying too much or working too hard.

A drug which works is vital. It was so obvious once I found a drug that suited me. Now I don’t really think about having a chronic disease often, but I do know that if I delay the medicine I take every other week by two days, I will feel my symptoms coming back. So a good drug really is critical.

Live your life, but listen to your body. I always try to see things positively: you can have a really good time. I always tell myself that it's possible to live a normal life, family life and everything, even though you have a chronic illness. But you need to listen to the disease as well. Sometimes it can feel tough, especially in the beginning. But it works out, I promise.

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