"Butterfly Children" are people with Epidermolysis Bullosa (EB), a rare, serious, and currently incurable skin disease. Their skin is as vulnerable as a butterfly's wings. Even the slightest touch can cause blisters and painful wounds. To raise awareness of EB and support those affected, Bayer, together with Swiss pharmacies and drugstores, is once again conducting a nationwide fundraising and awareness campaign for DEBRA Switzerland this year.
Bayer and DEBRA Switzerland: A shared concern
Skin and health are the focus of the patient organization DEBRA and the life science company Bayer. Bayer regularly supports DEBRA Switzerland with donations and campaigns to raise public awareness of the rare disease and provide relief to those affected.
"Butterfly Month" in October
In October, everything at Bayer is dedicated to the Butterfly Children. The goal of the campaign is to raise awareness of EB and, at the same time, collect donations for DEBRA Switzerland. As part of the campaign, over 1,200 pharmacies and drugstores throughout Switzerland were provided with information and display materials to raise public awareness of this rare skin disease.
Bayer will also donate one Swiss franc to DEBRA Switzerland for every Bepanthen® DERMA SensiDaily™, Bepanthen® PRO Sensiderm, and Bepanthen® DERMA Provitamin B5 Repair Complex product (excluding hand cream and lip products) purchased in October. In addition to the campaigns for the general public, further campaigns will be held in September and October in collaboration with pharmacy and drugstore staff.
At Bayer, it's all about the butterfly children in October
What is epidermolysis bullosa?
Epidermolysis bullosa (EB) is a congenital, severe and currently incurable skin disease. Due to a genetic defect, the body does not produce a certain collagen at all or only produces it inadequately. As a result, the individual skin layers do not hold together properly. Colloquially, those affected are called “butterfly children” because their skin is as vulnerable as the wings of a butterfly.
Depending on the form and severity, EB is associated with severe limitations that significantly affect quality of life and everyday activities. The skin of people with EB is very vulnerable and even the slightest mechanical stress can lead to blistering and large, painful wounds. It is often forgotten that not only the outer covering of the human body is surrounded by skin: in the case of EB, the mucous membranes or other organs are also frequently affected. This can cause painful wounds in the eyes, mouth, esophagus or gastrointestinal tract.
Living with epidermolysis bullosa
Everyday tasks that most people with healthy skin take for granted pose a major challenge for butterfly children and their families. Opening a PET bottle, cleaning your ears or biting into a pizza crust can be dangerous and cause large blisters and wounds.
The effects of EB can be severely debilitating in their most severe forms: adhesions between fingers and toes can cause reduced mobility. Swallowing can be very painful or sometimes impossible due to severe scarring of the oesophagus, which means that artificial nutrition via a gastric tube is required.
The daily lives of those with EB and their families are characterized by the enormous amount of care required. This includes hours spent changing dressings, as well as targeted measures to prevent further injuries: on the one hand, through the use of suitable clothing and protective bandages on exposed areas of the body, and on the other, through frequent application of ointments to prevent itching.
The patient organization DEBRA Switzerland is committed to the concerns and networking of those affected. Because EB is very rare, there is often a lack of experience in dealing with the disease. This is where DEBRA Switzerland offers essential support to those affected and those around them with EB counseling. The focus of EB counseling is on non-medical aspects of dealing with EB.
With the “Support for those affected” fund, DEBRA Switzerland enables the realization of special requests, such as aids or other meaningful requests that improve the quality of life or make everyday life with EB easier. The fund offers help where no other service provider – such as IV or health insurance companies – covers the costs.
Further information can be found here.
CH-20250926-144 2509