Anna is sitting with her mother in a hospital waiting room. This petite young woman with auburn hair is nervous and anxious about what might lie ahead for her. She has been experiencing severe pain for some weeks now. She suffers particularly painful sensations in her stomach and hands as well as when breathing. It is worst in the mornings and evenings. No one knows what causes this or can explain why Anna’s skin changes and suddenly feels so different; rough and thicker. Her doctor is unable to account for this, her family is frightened and this Hungarian woman living in the small town of Szombathely simply wants to know what is happening with her. Everyone she knows senses that she is seriously ill. That is why she is now sitting here in the hospital, waiting. As the minutes slowly pass, a poster catches Anna’s eye. Its heading is “Scleroderma” and displays facts about the disease as well as images of people suffering from it. Anna is shocked. She leans over to her mother. “How awful must it be to have that disease?” she asks. Some time later, Anna’s doctor tells her that she is suffering from scleroderma.
That was eight years ago. The very rare disease scleroderma, also known as systemic sclerosis, causes swelling and scarring of connective tissue. In many cases, the lungs and other organs gradually also suffer scarring, which can become life-threatening for patients. The disease affects around two million people worldwide, mainly women between the age of 25 and 55.
“Back then, my world completely fell apart,” Anna recalls. Even though the doctor assured her that many patients maintained a good quality of life with this disease, it felt as though she would never be happy ever again. “I simply couldn’t imagine how someone could lead a nice life with a disease like that”, says Anna, who is now 36 years old. At the time, she did a lot of research in order to find out what she faced. “Everything I found was absolutely terrifying.” She found no positive examples. Nor did she find anybody else suffering from this disease to talk things over with. “I was completely on my own.”
At the same time, she noted that she was experiencing more and more symptoms. Her mobility declined, she was out of breath more rapidly and had to give up hobbies. Before she fell ill, she had gone to the gym several times a week to exercise on a spinning bike. “But there came a point where I could no longer manage it, I simply didn’t have the strength. That really frustrated me,” says Anna. She also had to get used to regularly taking medicines and attending hospital check-ups as well as being suddenly extremely restricted, even in entirely normal everyday situations. “I couldn’t even use my credit card on my own since it was too much of a strain for my hands to take it out of my purse.”
Anna nevertheless learned how to cope with this disease. “I noticed that there were many important things which I was still capable of doing”, she says. She kept her job as a quality manager. “It was important for me that my colleagues continued to treat me normally and that I was able to do my job.” Nor did her social life change as a result of the disease. “My family is still the most important thing for me.” Her mother, brother and sister never leave her side during tests and consultations with doctors. Her friends also give her a lot of strength. “It was important to know that the disease can’t take them away from me.”
Scleroderma, or systemic sclerosis (SSc), is a rare, so far incurable disease. It is characterised by hardening of the skin and connective tissue. It affects around two million people worldwide1 and three times more women than men, mainly in mid-life. Lung diseases are a common manifestation of systemic sclerosis. This is particularly serious as most patients develop pulmonary fibrosis to some extent. Boehringer Ingelheim – a leader in respiratory medicine – has been conducting active research into the potential fatal consequences of fibrotic lung diseases for years. With its global initiative “More than Scleroderma: The Inside Story”, Boehringer Ingelheim is pursuing the goal of educating society as a whole and providing information about the disease to those interested.
To this end, the company collects inspiring stories from patients all over the world and publishes brief portraits of their lives on the website www.boehringer-ingelheim.com. These portraits may be video interviews or photo series. Sufferers can read about how other patients cope with the disease. At the same time, they learn about the progression of the disease and its in part serious effects. But the initiative is not seeking to scare people – on the contrary: the goal is to show patients that the disease will not determine their lives and that each of them can find their own way of coping with it. Eight portraits of patients from seven countries are currently featured on the website.
In the meantime, Anna has become happy once again, and maybe even happier than she was before her diagnosis: “Today I’m much more grateful for the little things.” She does not think about the future all that much. Whenever she feels afraid, she tells herself: “I’ve already been through the worst – what else can happen to me?” While she is naturally aware of the disease every day, it does not dominate her life. “I really only think about it when I take my medicines or have a hospital appointment.” And that despite her lung capacity now being just 65 per cent. Breathing exercises and medicines help, but many things are simply no longer possible.
Luckily, that does not include riding, which is like a therapy for Anna. Several times a week, she spends time at a riding school outside Szombathely. She rides there regularly – it is one of the few sports which she can still engage in. “The horses sense my mood without me having to say anything. That really comforts me on days when I don’t feel so good.”
On the days she spends in the sun with the horses she often forgets her illness. “The place means absolute relaxation for me.” The worst thing for Anna would be if she could no longer ride. For this eventuality, she nevertheless plans to continue to visit the horses. “Just being with them would be enough of a reason for me to go.”
Anna has decided to go public with her story in order to encourage other sufferers. “I would like to make it clear to them that they are not alone.” She has not forgotten that poster in the waiting room. “Seeing those horror scenarios makes it only worse – instead, we should be hearing more about people who live happy lives in spite of the disease.” People like Anna.