At Bayer, it's all about the butterfly children in October

Epidermolysis Bullosa is a rare skin disease that is both serious for sufferers and extremely stressful for their families. To raise awareness of the condition and help those affected, Bayer is conducting a nationwide donation campaign in collaboration with Swiss pharmacies and drugstores in favor of DEBRA Switzerland.

Skin and health – this topic is of common concern to the patient organization DEBRA and the life science company Bayer. Bayer Switzerland regularly supports DEBRA Switzerland with donations and various initiatives to raise awareness of the rare skin disease epidermolysis bullosa, which is serious for those affected and also places a heavy burden on their families, and to help those affected.

“Butterfly Month” in October
This year, Bayer is once again conducting a nationwide campaign and fundraising drive in support of DEBRA Switzerland in collaboration with Swiss pharmacies and drugstores. Bayer provided 1,285 interested pharmacies and drugstores throughout Switzerland with information and exhibition materials to raise awareness of Epidermolysis Bullosa among the general public.

Bayer is also donating one 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.

Promotions for specialist staff
In addition to this promotion, which is aimed at the general public, further promotions will take place in September and October in collaboration with specialist staff from pharmacies and drugstores.

It is important to us that the general public is educated about the rare disease epidermolysis bullosa, as those affected by EB often experience stigma due to a lack of knowledge. And of course donations are essential for us to be able to support those affected by EB and their families in their challenges.

Tatjana Jurkic

,

President of DEBRA Schweiz & mother of a son with EB

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.

With its awareness campaign, Bayer is doing additional valuable public relations work. Bayer's membership in the DEBRA support group also enables valuable exchange and additional donations.

Jennifer Pauli

,

Board member of DEBRA Switzerland & EB sufferer

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.

About the patient organization DEBRA Schweiz

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-20240926-76