Beiersdorf R&D has tailored a unique, personalized cosmetic sun protection product for a girl with a rare genetic light disease called erythropoietic protoporphyria (EPP).

For Charlotte, a four-year-old girl living near Münster, Germany, born with EPP, playing outside in the sunshine was not an option. 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. Since UV causes severe pain, they consistently seek shade whenever they are outside. This is why the disease was unofficially coined as “shadow jumping” by the psychologist Elisabeth Anna Rufener. 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, which the affected patient perceives as severe pain and appears as 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—including reaching out to Beiersdorf, the beauty giant behind Nivea.

Dr. Ludger Kolbe, chief scientist for photobiology at Beiersdorf began a research project to develop a cosmetic sunscreen to help Charlotte.

“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,” said Dr.  Kolbe



Applied thickly, the protective function allows the child to stay in direct sunlight for a short while, which was previously unthinkable. According to Nivea, Charlotte still needs to be very careful when in the sun, but it does give her a little more freedom when she steps outside. 

“The Nivea brand and the Beiersdorf Research and Development did everything possible to find a solution for Charlotte,” said Johannes Hesseling, Charlotte's father. “When we saw Charlotte laughing in the sun after applying the cream for the first time, we were overwhelmed.”

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; it is not part of the brand’s product portfolio and not for sale.