Bayer Switzerland Launches «Butterfly Month» for Those Affected by Epidermolysis Bullosa
In order to raise awareness of the skin disease Epidermolysis Bullosa – a rare yet serious condition for those affected which also places a burden on their relatives – and to help those affected, Bayer is running a nationwide information and fundraising campaign in support of DEBRA Switzerland.
The topics of skin and health are shared concerns for patient organization DEBRA and life sciences company Bayer. In order to raise awareness of the skin disease Epidermolysis Bullosa – a rare yet serious condition for those affected which also takes a toll on their loved ones – and to help those affected, Bayer has been supporting DEBRA Switzerland for the past year with donations and various campaigns. Bayer will be helping DEBRA Switzerland once again this year, by running a nationwide information and fundraising campaign.
«Butterfly Month» in June 2022
Bayer is launching “Butterfly Month” in June 2022. The company has also sent information and display window material to 800 interested pharmacies and drugstores across Switzerland, to help raise awareness of Epidermolysis Bullosa among the general public. Bayer Switzerland will also be donating one franc to DEBRA Switzerland for every Bepanthen® DERMA SensiDaily™ protective balm product sold in the month of June. Alongside this campaign, which is aimed at the general public, further fundraising campaigns are planned in collaboration with pharmacy and drugstore professionals.
«Bayer is also doing valuable public outreach work with its awareness campaign. Bayer’s sponsorship of DEBRA also facilitates valuable exchange and generates further donations.»
What is Epidermolysis Bullosa?
Epidermolysis Bullosa (EB) is a serious, and at present incurable, congenital skin disease. Due to a genetic defect, a specific collagen is not or only inadequately produced by the body. As a consequence, the individual layers of the skin do not bind together properly. Those affected are informally referred to as “Schmetterlingskinder,” (butterfly children) because, figuratively speaking, their skin is as fragile as the wing of a butterfly.
Depending on the form and degree of severity, EB is associated with severe limitations, which significantly affect quality of life. The skin of people with EB is very fragile and even the slightest mechanical stresses cause blistering and large painful wounds. It is often forgotten that it is not just the outer shell of the human body that is covered in skin: EB often also affects the mucosa and other organs. This means that painful wounds can also occur in the eyes, the mouth, the gullet, or the gastrointestinal tract.
«It is vital for us to educate the population about the rare disease Epidermolysis Bullosa, as those affected are often stigmatized due to a lack of awareness. And, of course, donations are essential for us, so that we can support those affected by EB and help their families cope with the challenges they face.»
Living with Epidermolysis Bullosa
Everyday things and activities which are taken for granted by most people with healthy skin, represent a huge challenge for butterfly children and their families. Opening a plastic bottle, cleaning your ears, or biting into a pizza crust can be dangerous and cause large blisters or wounds.
In its more severe forms, the effects of EB can lead to severe physical limitations: for instance, fingers and toes can fuse together causing restricted mobility. Swallowing is very painful, and in some cases even impossible, due to severe scarring of the gullet, which means that artificial feeding via a gastric tube may be required.
Everyday life for those affected by EB and their relatives often involves round-the-clock care. Dressing changes that last for hours are as much a part of this as targeted measures to avoid further injuries: These can include using suitable clothing and protective dressings for exposed body parts, or frequently applying ointment to prevent itching.