Top sporting performance despite Ehlers-Danlos syndrome
“We need to embrace change as something that makes us stronger, that makes us a better version of ourselves,” advises Jessie Kaps to anyone who is also affected by a chronic illness. Since birth, the 26-year-old has suffered from Ehlers-Danlos syndrome (EDS), a congenital disorder of the connective tissue, and associated lipedema and lymphoedema. She has been active in sport since childhood and came 27th in the women's 10m air rifle discipline at the 2021 Summer Olympics in Tokyo. In this interview, Jessie Kaps explains how sport has helped her to cope better with her illnesses and which other therapy components alleviate her symptoms.
Ms. Kaps, you have suffered from Ehlers-Danlos syndrome since birth. What exactly does this mean?
“This is a rare group of connective tissue disorders that are hereditary and can be classified into 13 subtypes - the symptoms and signs in patients are therefore very different. Basically, collagen, which makes up the majority of connective tissue, no longer adequately holds bones, teeth, cartilage, tendons and ligaments together. As an analogy, you can imagine a wall with bricks, where the construction is not held together by cement, but by sand. In my case, my skin stretches further than in healthy people, I can overstretch my joints and my blood vessels are very fragile. As with many rare diseases, it was a long ordeal before I was diagnosed. It wasn't until 2023, after a serious car accident in which my brain trauma lasted an unusually long time, that a specialist diagnosed Ehlers-Danlos syndrome.”
Image: © Jessie Kaps
How does the disease manifest itself in everyday life?
“I have migraine attacks and porcelain-like, velvety skin that is easily irritated and sore. For as long as I can remember, I've been prone to injuries, bruises and skin abrasions caused by my clothes, among other things. My joints are hypermobile, unstable and move easily. I also suffer from lipoedema on both legs and arms as well as lymphoedema, which affects almost my entire body: legs, arms, hands, stomach and face. The lymph fluid builds up, especially when it's warm in summer, and I get a fuller face and lower chin. Although both conditions are common in my family, the diagnoses came as a shock to me at the age of 19. Wearing medical compression throughout my life was difficult for me to accept.”
Medical compression garments for the effective treatment of lipoedema and lymphoedema
How did you find the strength to overcome your physical and emotional hurdles?
“I had to rediscover my identity and accept medical compression garments as a part of me. An important aspect of this was finding the best medical compression garment. I did a lot of research online and on social media and also wrote to Caroline Sprott, who is also a lipoedema sufferer. She gave me great tips and encouraged me not to see myself as a victim, but to confidently go my own way, tell my story and make people aware of it. I also found a medical supply store where I feel I am in good hands and that gives me individual advice. Today, I wear the flat-knit medical compression tights mediven 550 leg with toe caps from medi, mediven 550 arm sleeves as a bolero and mostly closed gloves. I have pads and an extra soft lining in my knees and elbows to protect my sensitive skin and joints. The medical compression garments make me feel better - I notice that if I don't wear them, the pain slowly returns.”
Image: © Jessie Kaps
Exercise and a healthy diet can positively support the treatment of lipoedema and lymphoedema
What other therapy components help you to cope better with the disease?
“I have special donning aids to put on my medical compression garments and I apply cream to my body every day. I also regularly go for manual lymphatic drainage and use a lymphomat (a device that stimulates the lymphatic system using air pressure chambers) privately - this is a real benefit, especially for regeneration after sport. I have also changed my diet and now focus on healthy foods with few carbohydrates and a high proportion of unsaturated fatty acids as well as lots of fruit and vegetables. This has helped me lose 15 kilos and I feel better overall. Of course, a lot of exercise has also helped me to lose weight. For my sport, rifle shooting, however, the physical changes were a big adjustment at first.”
In what way?
“More weight usually also means better stability when shooting. I also have to adjust my guns to my body measurements: If I have increased water retention in my face, for example, my contact surface for the rifle is different. And last but not least, my competition suit no longer fits due to the weight loss. As with other disciplines, these suits are individually tailored to us athletes. As sport shooting puts a lot of pressure on the body, the suit should primarily provide support and protect the back and hips from injury.”
How did you get into air rifle shooting?
“My grandfathers were in the police and the army, and my parents are also keen marksmen. We used to go to the club three times a week to train when we lived in Belgium. Nowadays that would be unthinkable, but back then children were also allowed to shoot. It was quite playful at first, of course, but as a teenager I went to competitions and was very successful.”
Image: © Jessie Kaps
Longstanding dream of the Olympics despite Ehlers-Danlos syndrome
Three years ago, you qualified for the 2021 Summer Olympics in Tokyo. What was your first reaction?
“Due to the lockdown during the coronavirus pandemic, I was able to train in isolation beforehand, without competitions, without traveling and concentrate on the sport. At the first major competition after the lockdown, the European Championships, I won the silver medal for Belgium as a German-Belgian. When the announcement came that the quota places for Tokyo were going to France and Belgium and that I had secured my ticket for the Olympics, I was completely flabbergasted and didn't even realize it at first. It was only when I saw my coach with tears in his eyes that I realized: We're going to Tokyo! It was an absolutely unreal moment and I was so happy!”
How did you experience your time in Tokyo?
“Nobody had my qualification on their radar. As an athlete in my early 20s, I was just out of junior age - and suddenly I was an Olympic athlete. We only had two months to prepare. There were requests for interviews, TV appearances, I went through media training in fast-forward, the marketing had to be determined. Together with my coach and team, we took care of clothing, flights and visas - it was all very last-minute. The European Championships would actually have been the end of my season and my batteries were empty as a result. Looking back, I lacked the mental maturity to compete in a competition of this size. I couldn't handle the stress and expectations, especially my own, with confidence. After the competition, I was initially disappointed - even though I came 27th out of almost 80 participants. But my coach and the team did a great job of picking me up. I'm incredibly grateful to have had this experience and to have been there - I'll take the impressions of the Olympic Village with me for the rest of my life. Unfortunately, it wasn't enough for Paris this year due to my serious car accident in March 2023, but my next big goal is Los Angeles 2028. I'm working hard towards that.”
Sport can improve the quality of life of people with Ehlers-Danlos syndrome and help them stay motivated
Does sport help you to cope better with your disease?
“Basically, I realize how good exercise does me mentally and physically. I've always been very active, skiing in winter, cycling or inline skating in summer. I also train on the cross trainer and do cardio and strengthening exercises for my muscles. I try to keep myself as fit as possible - especially because of my illnesses. Through sport, I've learned not to be discouraged by defeats, but to get back up and start again. Discipline, structure and perseverance are not only essential in sport and make all the difference, but also help when dealing with illnesses such as lipedema and lymphoedema. It's OK to feel bad sometimes, but illness should not be allowed to define the rest of our lives. Everyone goes through events that change us - some are more dramatic than others. But that shouldn't stop us! On the contrary: we need to embrace change as something that makes us stronger, that makes us a better version of ourselves.”
Image: © Jessie Kaps
What beautiful closing words! Thank you very much for the interview!
