Pfullendorf, November 21, 2024 – Serina Berger is 21 years old and lives with the intermediate form of the rare disease Epidermolysis bullosa (EB), commonly known as butterfly disease. She is passionately creative – no wonder she chose a dual study program in Graphic and Media Design in Ravensburg. “Graphic design has always been my thing,” she says. “I especially enjoy working with videos – I’m a real film fan. My goal is to work as an animation designer.” Serina’s parents describe her as a cheerful and humorous person. “And she is incredibly ambitious,” her father Stefan says proudly. He has been working for SPIE ESCAD in Pfullendorf for more than 25 years. He smiles at his next thought: “But watching movies with her is exhausting because she’s always commenting on how they were made.”
Serina has accepted the disease as part of her life and takes each day as it comes: “There are ups and downs. That makes planning difficult sometimes,” the 21-year-old explains. “The most important thing is not to get too stressed. That immediately affects how I feel.”
Daily life with EB requires a lot of organization: Serina’s bandages are changed twice a week, which takes up to eight hours. The materials, including special silicone layers, cost the Berger family between 60,000 and 70,000 euros annually. On top of that are additional aids that, for example, reduce the risk of injury for Serina, or surgeries. The application process is tedious, burdened with bureaucracy, and costs those affected and their families a lot of time, money, and nerves.
Support from DEBRA Austria and Dermakids e. V.
This is where the organizations DEBRA Austria and Dermakids e. V. come into play. They are indispensable partners for families like Serina’s. DEBRA Austria provides medical support, coordinates surgeries, and conducts studies to develop better treatment methods or even a cure. Finding doctors who are familiar with EB is not that easy. Once a year, Serina and her family therefore travel to a specialized clinic in Salzburg. There, her health status is checked and treatment methods are tested.
The association Dermakids e. V., on the other hand, handles legal issues. The team there supports families in obtaining medication and bandaging materials and helps with disputes with health insurance companies. “Without these organizations, it would be almost impossible to manage the financial and organizational challenges,” says Stefan Berger. “A lot of what helps Serina has to be fought for first. That’s why we are very grateful that we can rely on help for this.”
SPIE ESCAD supports both organizations with 750 euros each. They perform indispensable work, not only for those affected but also for their families. For us, a truly good reason to help.
Serina’s look into the future
When asked what she wishes for her future, Serina answers: “Of course – that a cure for the disease can be found. Or better methods to alleviate the symptoms. But actually, I am happy with my life.”
