The research and development department of Beiersdorf, the skin care company behind the NIVEA brand, has used its profound knowledge of the skin and research expertise to tailor a unique cosmetic sun protection product, specially made for a girl named Charlotte with a rare light disease called EPP. Research results on visible, high-energy light showed that special light-scattering pigments need to be added to the cosmetic sunscreen for Charlotte. This can prevent the light from penetrating the skin, allowing the girl to be exposed to sunlight for a short period of time – allowing her to enjoy a better quality of life.
Charlotte, a four-year-old girl living near Münster, Germany, was born with the very rare genetic light disorder EPP. When her skin comes into direct contact with the visible, colored components of sunlight, a genetic defect causes neuropathic pain and triggers burns on the skin. Even as a baby, Charlotte suffered and cried out when the sunlight touched her skin, which is why her parents did everything they could to find help. When they reached out to NIVEA and Dr. Ludger Kolbe, a research project was launched for an innovative cosmetic sunscreen to help Charlotte.
The research was led by Dr. Ludger Kolbe, Chief Scientist for Photobiology at Beiersdorf and his team. Thanks to their expertise, they were able to develop a unique cosmetic sunscreen exclusively tailored to Charlotte. Dr. Kolbe explains: “With the high standards of skin protection that we at NIVEA pursue, we are delighted that we were able to find a special solution for Charlotte. With her personal sunscreen, she still has to be careful in the sun, but can spend a little longer playing outside with her friends.”
The cosmetic sunscreen has changed the family’s life. Applied thickly, the protective function allows the child to stay in direct sunlight for a short while – which was previously unthinkable. For Charlotte’s parents, this means an immense relief in everyday life: “The NIVEA brand and the Beiersdorf Research and Development did everything possible to find a solution for Charlotte. When we saw Charlotte laughing in the sun after applying the cream for the first time, we were overwhelmed,” says Johannes Hesseling, Charlotte’s father.
The biological effects in sensitive and EPP skin are different which leads to the need of different care. This cosmetic sunscreen was especially developed for Charlotte and her individual skin needs, and thus is not part of our product portfolio or for sale. The product cannot cure EPP and Charlotte still needs to be very careful when in the sun, but it does give her a little more freedom when she steps outside. In the summer of 2021, the product was ready to be used by Charlotte for the first time.
When the sun becomes a challenge
For EPP patients, UV (the blue light from sunlight) causes severe pain, so they consistently seek shade whenever they are outside. This is exactly why the disease was unofficially coined as “shadow jumping” by the psychologist Elisabeth Anna Rufener[1]. Shadow jumping disease is caused by a rare genetic defect: When exposed to sunlight, a precursor of the red blood pigment, protoporphyrin, is deposited in the blood vessels. This ensures that energy from visible light is absorbed and triggers a chemical reaction – a burn in the vessels, which the affected patient perceives as severe pain and appears as burns on the skin[2].
- Source: EPP-Deutschland, Selbsthilfe EPP e.V. (2022/13/04) “Wenn Sonneweh tut”
- Source: vfa: Die forschenden Pharma-Unternehmen (2022/10/10) “Selbsthilfe EPP e.V. – Patienten mit erythropoetische Protoporphyrie”
