Pfullendorf, November 21, 2024 – Serina Berger is 21 years old and lives with the moderate 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 was always my thing”, she says. “I particularly enjoy working with videos – I’m a real film buff. 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”, says her father Stefan 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 always comments on the filmmaking.”
Serina has accepted the disease as part of her life and takes each day as it comes: “There are ups and downs. That sometimes makes planning difficult”, explains the 21-year-old. “The most important thing is not to stress too much. 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 dressings, cost the Berger family between 60,000 and 70,000 Euros annually. In addition, there are additional aids that, for example, reduce Serina’s risk of injury, or operations. The application process is tedious, overly bureaucratic, and costs patients 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 offers medical support, coordinates operations, and conducts studies to develop better treatment methods or even a cure. Because 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, deals with legal matters. The team there supports families in obtaining medication and dressing materials and helps with disputes with health insurance companies. “Without these organizations, it would hardly be possible to overcome the financial and organizational challenges”, says Stefan Berger. “Many things that help Serina first have to be fought for. That’s why we are very grateful that we can rely on help with this.”
SPIE ESCAD supports both organizations with 750 Euros each. They do indispensable work, not only for those affected themselves, but also for their families. For us, it’s a really good reason to help.
Serina’s Outlook on the Future
When asked what she wishes for her future, Serina replies: “Of course – that a cure for the disease can be found. Or better methods to alleviate the symptoms. But actually, I’m content with my life.”
