Ankylosing spondylitis also affects young people
Early diagnosis is important.
Back pain? It's harmless, right? Not for young people with ankylosing spondylitis. This chronic condition often starts early, but is only diagnosed late. Elisa Pachernik experienced exactly that. Her symptoms began at age 14, and she received a definitive diagnosis at 19. In this interview, she talks about how she learned to live with the disease.
Ankylosing spondylitis is primarily associated with older adults. However, the first symptoms usually appear at a young age—most often between the ages of 15 and 35. However, ankylosing spondylitis is usually only diagnosed at an advanced stage, when those affected are already older. Some suffer from severe symptoms of the disease at a very young age. It is therefore important to raise awareness that many young people are also affected. Only then can timely treatment improve their quality of life.
Like Elisa Pachernik. The 25-year-old has had Bechterew's disease since her youth. In this interview, she talks about how she has learned to cope with the disease.
Ankylosing spondylitis is a chronic inflammatory disease that primarily affects the spine. Not only older adults, but also many young people suffer from it. Ankylosing spondylitis often leads to painful spinal symptoms and can significantly impair daily life. Typically, the symptoms begin gradually and can cause severe back pain and stiffness. Over time, the inflammation spreads further and often leads to stiffening of the spine, which can significantly restrict mobility.
Ankylosing spondylitis in young people
Although ankylosing spondylitis is more commonly diagnosed in older adults, the disease is not a sign of aging. Rather, it is a chronic autoimmune disease. This means that a misguided immune system attacks the body's own cartilage and bone tissue, causing inflammation.
The exact causes of ankylosing spondylitis have not yet been fully researched, but genetic factors play a role. The HLA-B27 gene has been linked to an increased risk. However, not all ankylosing spondylitis patients show changes in this marker in their blood.
The treatment of ankylosing spondylitis aims to relieve pain, control inflammation, and maintain functionality. Medications such as nonsteroidal anti-inflammatory drugs (NSAIDs), biologics, and physical therapy can be used. Early diagnosis and appropriate treatment can significantly improve the quality of life of those affected. It is therefore important to raise awareness that many young people are also affected. Only in this way can timely initiation of therapy improve quality of life.
Interview with a young patient suffering from ankylosing spondylitis
For young people with ankylosing spondylitis, coping with the disease can be particularly challenging. Our patient Elisa Pachernik, now 25 years old, talks about her experience with ankylosing spondylitis and how she has managed to cope well with the disease.
Elisa, you are 25 years young today and have been suffering from symptoms for 10 years. That is a long time for someone so young. Can you tell us about it?
"Sure. Basically, I've had problems on and off since I was 14. At first, my pain was dismissed as typical 'growing pains'. Or I was told I was wearing the wrong shoes. Even when I came of age and started my training as a nursing assistant, not much changed. I had severe back pain and nothing helped. Since the doctors couldn't find anything wrong, the symptoms were attributed to psychological problems. At the time, I often asked myself whether I was imagining it all. It was a difficult time because I didn't feel like I was being taken seriously."
But you didn't imagine the pain!
No. I didn't give up and then met a doctor who suspected that the pain was caused by inflammation. At that point, I had severe back and joint pain and my knees were swollen. I then tried injections. When that didn't help, blood was finally taken and changes in the HLA-B27 gene were detected. I was 19 years old when I was diagnosed with undifferentiated spondyloarthritis."
That's an age when you probably don't know what's behind the illness, right?
"At first, I wondered what it actually was. I thought it was something only old people had. Even as a qualified nurse, I hadn't learned that rheumatism can also affect young people."
How did you deal with the diagnosis?
"At first, I pushed it out of my mind. I was in a 'I don't care about anything' mood. I was also very uncertain about the medication. Sometimes I was desperate, but other times I was relieved that I wasn't imagining the pain. Many of my friends didn't understand me and couldn't comprehend that I didn't have the energy to party every weekend. Some of them even turned their backs on me."
That certainly wasn't easy. What happened next?
"I have learned to find a new everyday routine. After a period when I was not doing well at all, when I was struggling with respiratory infections and the therapies caused many complications such as allergic reactions, things finally started to improve. I have learned to some extent to accept the disease and take things as they come. At first, for example, I often asked myself where the future would lead, how I could continue to work as a nurse in the long term. Today, I just try to make the best of every day."
For some time now, treatments in the Gastein Healing Gallery have also been part of your life. How did you come up with that idea?
My rheumatologist recommended the Gastein Healing Gallery to me. And even though I struggled with the idea at first – I simply felt too young for a spa treatment – it was a good decision. Of course, my rheumatism hasn't been cured, but I feel better since the treatment. I feel fitter, more flexible, and less stiff, and I have less pain and inflammation. The effects on my immune system are also very good."
Have you been less ill since you started going to the healing gallery?
"Exactly. Before, I had constant infections that often kept me busy for a long time. When I'm in the tunnel, I'm much less sick, which is unusual for me. The healing gallery entrances simply do me good."
And what was it like to go to a health resort as a young person?
Going into the healing gallery for the first time was quite exciting. But at the same time, it was relaxing. Of course, it's still a little strange to go in as a young woman. Some people wonder what I'm doing there at my age. But I'm a very open person and can actually have fun with anyone. Many of my fellow patients have been there for a long time because it helps so much. That naturally gives me hope. Sharing different experiences is also very helpful."
The illness must have changed you too.
Yes, I try to appreciate every day and enjoy the beautiful moments. An illness like this shapes you. Everyone has their own baggage to carry. For some, it's just heavier. Many people can't imagine what it's like to live with an illness like this. That's not a bad thing, as long as everyone is accepted for who they are."
Thank you very much for the candid conversation.
As the world's largest therapy center for ankylosing spondylitis, you will find a separate page with useful information about this condition: Ankylosing spondylitis
