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Hope for butterfly children: Simon wants to heal!
On May 19, 2025, a campaign will provide information about "butterfly children", whose support through fundraisers for research is essential.
Hope for butterfly children: Simon wants to heal!
In Austria, around 500 people suffer from the rare skin disease epidermolysis bullosa (EB), also known as “butterfly disease”. This incurable disease is characterized by particularly vulnerable skin, which reacts by blistering and tearing even to minimal injuries. Today the butterfly children are part of a broad support campaign coordinated by the DEBRA Austria organization. Particularly noteworthy is the brave wish of little Simon, who, despite his challenges, wants to work as a researcher in order to one day help other children with the same disease.
The “Bepanthen supports the butterfly children” campaign has now collected 66,772 euros in 2024, which were handed over to the DEBRA Austria organization. This is part of a longer initiative that generated a total of 575,000 euros for research over nine years. The amount comes mainly from the sale of Bepanthen ointments, with one euro being donated for each unit sold. This campaign has mobilized almost 70,000 supporters and shows the population's great interest in improving the living situation of those affected.
Challenges and support for those affected
Epidermolysis bullosa is a genetic disease that affects not only children but people of all ages and is lifelong. The disease has a prevalence of 1:17,000, making it one of the rare diseases. Those affected have to live with chronic pain and non-healing wounds every day. In addition, many patients have an increased risk of serious complications, including squamous cell cancer, which can be diagnosed in the majority of patients by the age of 55.
Interdisciplinary approaches are required to treat patients' symptoms and wounds. These include not only wound care and pain therapy, but also preventive measures to avoid injuries. State-of-the-art diagnostic procedures and innovative approaches in cell and gene therapy offer hope for an improved quality of life. Advances in gene editing such as CRISPR could open up new therapeutic possibilities.
A ray of hope for the future
The future of research and treatment for epidermolysis bullosa looks promising. Scientists are currently working on genetically modified stem cells that support skin regeneration. The use of losartan, a blood pressure medication, has also shown positive effects on blistering. These developments could soon be crucial in improving the lives of people with EB.
Support through campaigns like that of DEBRA Austria is therefore essential. They help ensure that sick people, like little Simon, can one day hope for better treatment and be able to realize their dreams. The community in Austria has already proven that it is ready to help and stand up for the butterfly children.