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When a teenager complains of back pain, the last thing that comes to his parents and doctors’ minds is rheumatism. Meanwhile, ankylosing spondylitis attacks between the ages of sixteen and thirty. Every fourth Pole suffers from rheumatic diseases.
– My rheumatism was a bit vampire. At first, he only came to me at night. He took a bite from his hiding place when I was 7 years old. I remember from that period the sleepless nights and incomprehensible pain that I could not bear – recalls 37-year-old Jakub Górecki, suffering from AS – ankylosing spondylitis.
From the playground to the hospital bed
Nobody saw why Kuba was suffering. – Listening to fairy tales told by my mother helped and… the aspirin, which I got when I couldn’t stand it anymore – she says. Before he was diagnosed with AS, Jakub was treated at the orthopedics ward. – As a thirteen-year-old I found myself in the bed of the orthopedic ward of the Bielany Hospital in Warsaw. I limped over to him alone. I was lying in the room with boys my age with various injuries. During the puppy banter, I threatened one of them that I would approach him soon. «Then get up» said the teenage dude. I got up on the bed, jumped to the floor and… my legs buckled under me. I was unable to support my weight on them. I cried out in pain mixed with rage. The doctors didn’t really know what was wrong with me. After lying on the bed for a few days, I had trouble rolling over. It wasn’t too long ago that I was running around on the pitch, and now I was incapable of self-service. Painkillers helped moderately. The parents were terrified. Three weeks after my admission, I was discharged with a referral to the Institute of Rheumatology and Rehabilitation. Then the correct diagnosis was made – he recalls.
Narrow window
AS is a chronic, inflammatory disease of the spine and sacroiliac joints. The underlying inflammatory process occurs for an unknown reason. It leads to stiffness of the joints and the spine, and consequently to limitation of its mobility and the inability to perform basic activities. – The most important thing is early diagnosis. In rheumatic diseases, the so-called the therapeutic window, or the time when we can most help the patient, is three to six months after the onset of the inflammatory process. Modern therapies applied early enough allow the disease to be stopped before there is damage to the musculoskeletal system and disability – says rheumatologist Dr. Maria Maria Rell-Bakalarska. However, it is difficult to diagnose AS because symptoms can only be seen on X-rays after 5-7 years. Meanwhile, the spine is permanently stiffened. If a person becomes stiff at the age of 30, they will stay that way for the rest of their lives. Therefore, any chronic back pain lasting more than 3 months requires a medical consultation. In the initial stage of the disease, patients suffer from low back pain radiating to the legs, then the disease covers the entire spine and chest, causing difficulties in breathing and movement. Other symptoms include fatigue, weakness, fever and weight loss. There may also be recurrent inflammation of the eyes and problems with internal organs, especially the lungs, heart and kidneys.
Checked basketball player
Rheumatologists restored fitness to thirteen-year-old Jakub. – However, I heard that I have to say goodbye to basketball and sports in general. I might consider chess. Chess? Me, the proud owner of a Michael Jordan T-shirt, would I play chess? It took me a good few years to accept these recommendations. The pain and fear of its appearance accompanied me all the time. I always had to have pills in my backpack. There have been exacerbations, often caused by infections, when it was really hard. Entering the lecture hall (Auditorium Maximum UW has those damn grades!) Was really hard. Not only did you have to get to the designated place, but also do it discreetly, without making a show of yourself. I also remember how my girlfriend at the time, and today’s wife, almost had to carry me to the bathroom, because I was not able to tense my spine muscles without howling in pain. However, despite the fact that the tutor at the sanatorium for children and adolescents did not expect me to be particularly successful in science with my disease, I finished my studies. I work as a psychologist and I try to write a doctorate in the psychology of humor and creativity, which is difficult in the multitude of duties – he says.
Every fourth Pole suffers
Under the slogan “rheumatism” there are about 200 diseases that affect people regardless of age, gender or race. It is estimated that over nine million Poles suffer from them – statistically, every fourth. Diseases such as rheumatoid arthritis (RA), systemic lupus erythematosus, juvenile idiopathic arthritis (JIA) or ankylosing spondylitis (AS) most often affect young people aged 30-50. Within a few years, they can lead to disability. They also increasingly attack children, and sometimes even babies. These are incurable diseases that must be fought against, ensuring the best quality of life for young patients. That is why it is so important to make a correct diagnosis as soon as possible and start treatment. This, however, is not easy. There is a shortage of rheumatologists in Poland. You can wait up to several months for an appointment. It’s even harder to start rehabilitation. The waiting period is longer than six months. Patients for whom chemical drugs do not work are qualified for biological treatment. Experts estimate that only 2 percent of us use such therapies. sick, while e.g. in the Czech Republic 4% and in Germany 30%. Besides, the National Health Fund only finances such treatment for 18 months, and for patients who get better, they suspend it earlier. – It is as if a diabetic who managed to control blood sugar levels would take insulin, which is also a biological medicine. According to medical knowledge, biological treatment in these diseases is discontinued only when the drug stops working or the patient develops side effects, says Dr. Rell-Bakalarska.
He won’t look for girls
Jakub is treated with biological drugs. – I am not as stiffened as General Jaruzelski, which threatened me. However, I try not to photograph myself in profile, because my “zztową” figure is clearly visible. I am not able to make some moves anymore, although apparently you can see an advantage in this. As my lady doctor advertised me to my future wife: well, he is a bit stiff, but at least he will not look after girls!
The disease, however, tries to find a way to get to me. And this attacks the eyes: I have a dozen or so inflammations of the iris on my account, and this, through medication, destroys the gastric mucosa. For years, I have been struggling with stomach disease associated with many years of taking medications. Unfortunately, the mucosa shields were not used in the past – he says. Jakub took part in the “Rheumatism has a young face” campaign, which aims to raise awareness about rheumatic diseases affecting young people. – I spent many months of my childhood and youth in hospitals and sanatoriums, but with the help of wise doctors, whom I was lucky to meet and my relatives, I manage to lead a pretty cool life. However, I met sick people who were not so lucky. I would like everyone to know that rheumatism is not a geriatric disease that affects older people. This disease also has a face that you wouldn’t expect from it. Young. This is also my face – he says.