Charlotte has a rare skin condition so she is swinging under a tree where she is protected from the sun

 

A RAY OF HOPE

FOR A RARE SKIN CONDITION

At NIVEA, we believe that everyone deserves to feel great in their skin. So, we’re sharing Charlotte’s story and how we developed an innovative cosmetic sunscreen just for her, to help her stay in the sun for longer.

 

An illustration of Charlotte who has a rare skin condition called EPP.

CHARLOTTE’S STORY

Charlotte was diagnosed with EPP by Prof. Thorsten Marquardt, when she was just two years old. Also known as Shadow Jumper disease, this condition means that Charlotte can’t stay in the sun for long without feeling pain, and the sun’s blue UV light causing her skin damage.

 

Via Charlottes parents, Prof. Marquardt reached out with the idea for a solution and that’s when our NIVEA Research & Development team, headed by Dr. Kolbe, stepped in with their skin expertise. EPP can’t be cured, but together we saw a way to help protect Charlotte’s skin and improve her quality of life. We created an extra-protective cosmetic sunscreen for her sensitive skin. It goes beyond protecting against UV light by providing blue light protection for the skin, allowing Charlotte to spend more time outside, enjoying and playing in the sunshine for longer. Doing what we can, with our expertise, to help.

A real image of Charlotte who has a rare skin condition called EPP.

A FAMILY’S FIGHT

TO HELP THEIR DAUGHTER

THEIR JOURNEY

 

A family will do anything they can to better their children’s lives. Charlotte’s parents never gave up. Willing to do anything to help their daughter, the Hesseling family persevered in their search for a way to help Charlotte stay protected in the sun for longer and enjoy her childhood.

 

BELIEVING IN CHARLOTTE’S SKIN

THE SCIENCE BEHIND

 

At NIVEA, we believe that innovation has the power to improve and care for every kind of skin.
With years of skin expertise and research on how light affects it, Dr. Kolbe and our Research & Development team developed a unique and innovative solution, in close collaboration with Prof. Marquardt to help protect Charlotte’s extra-sensitive skin. Charlotte’s extra-protective cosmetic sunscreen provides effective blue light protection and enables her to enjoy the sunlight for longer—giving her a brighter outlook!

 

JOINED EXPERTISE FOR CHARLOTTE

HER MEDICAL DOCTOR

 

On Charlotte's parents’ journey to find a solution for their daughter, Prof. Dr. med. Marquardt, Charlotte's doctor, was instrumental. He was convinced that an unconventional solution in the form of a cosmetic sunscreen was the best option and reached out to Dr. Kolbe.
By combining their knowledge and expertise, the right, safe solution for Charlotte was found. She can now be in the sun a little longer than she ever could before.

 

An illustration of a NIVEA skincare expert who is developing an innovative cosmetic sunscreen with blue light protection.
 

 

WHAT IS BLUE LIGHT?

The sun’s light usually appears bright yellow to your eyes, however, if you split it, you see all colors of the rainbow. The blue part of the sunlight has high energy which may damage your eyes and skin if exposed to it unprotected for long periods. Blue light from the sun isn’t usually harmful to normal skin on a regular day in the sunlight, however, for EPP patients it can negatively affect the skin within a few minutes and cause a lot of pain. Keeping your skin protected in strong sunlight is recommended for everybody, but it’s absolutely necessary for those with sensitive skin conditions caused by EPP.

 

 

An illustration where the sun’s blue UV light causing Charlotte

ERYTHROPOIETIC PROTOPORPHYRIA (EPP)

EPP is an extremely rare and lifelong inherited condition arising from a high quantity of protoporphyrin in red blood cells, resulting in immediate pain when exposed to the sun’s blue light. Often occurring in childhood, EPP manifests as intense burning and itching of sun-exposed skin, especially on the nose, cheeks, and hands. It’s often followed by redness, swelling, or blanching, lasting from minutes to days.

 

Although a medical treatment has been developed for EPP, it is not available for children, for them, it’s necessary for patients to wear protective clothing and stay in shaded areas to protect themselves from sunlight. Even though we cannot cure the disease itself, we could help Charlotte enjoy her life a little bit more by protecting her skin with an extra-protective cosmetic sunscreen when she’s out in the sun, allowing her to play outside for longer.

FAQ's

Where can I purchase the special sunscreen from you?

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.

How much does the cream cost?

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.

Is the cosmetic cream marketed under NIVEA or one of your other brands?

The cream is not part of our product portfolio, as it was developed specifically for the needs of Charlotte's skin.

In which countries is the cream available?

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, in any country.

Is the cream a medical device or product?

No, Charlottes Cream is a cosmetic sunscreen product, similar to all NIVEA sun protection products but developed specifically for the needs of Charlottes skin.

Why will you not include the special sunscreen in the NIVEA portfolio?

The cosmetic sunscreen was especially developed for Charlotte and her individual skin needs; thus, it is not part of the existing NIVEA product portfolio, or for sale. However, the scientists in the Beiersdorf Research and Development teams are examining the possibilities of future developments of blue light protective sunscreen solutions.

Will NIVEA offer dermatological skincare in the future?

NIVEA offers cosmetic sunscreen products. The Beiersdorf group also offers dermatological skin care under its EUCERIN brand.

Will Charlotte continue to receive the cream from NIVEA in the future or was it just a one-time production?

Charlotte will continue receiving the cream as long as it helps her.

I burn very quickly in the sun. Do I therefore suffer from EPP?

Some people are more sensitive to sunlight than others. If you are worried, please consult your doctor/ dermatologist for advice.

What is special about this cream?

For people suffering from EPP, the blue light from sunlight causes severe pain. Research results on visible high-energy light showed that special light-scattering pigments need to be added to the cosmetic sunscreen for Charlotte. It is preventing the harmful blue light components from reaching the skin. It is very important to point out that this innovative cosmetic sunscreen cannot cure EPP or improve any symptoms and Charlotte still needs to be very careful when in the sun, but it protects the skin, allowing her to be exposed to sunlight for a short period of time.

I would like to test Charlotte's cream. Can you please provide me with a sample?

The cosmetic sunscreen was especially developed for Charlotte and her individual skin needs; thus, it is not part of the existing NIVEA product portfolio, or for sale, nor to provide samples. However, the scientists in the Beiersdorf Research and Development teams are examining the possibilities of future developments of blue light protective sunscreen solutions.

How did you test/develop Charlotte's cream?

The research at NIVEA was led by Dr. Ludger Kolbe, Chief Scientist for Photobiology at Beiersdorf and his team and in close collaboration with Prof. Thorsten Marquardt from the University Hospital in Münster, Germany (UKM). Thanks to their expertise they were able to develop the unique cosmetic sunscreen developed specifically for the needs of Charlottes skin. Each of our products, including Charlotte's cream, must undergo comprehensive testing to secure the quality and safety. For cosmetic sunscreen products, we also test their effectiveness in protecting against UVA and UVB rays. In the case of Charlotte's cream, we have additionally developed a testing method that allowed us to test all prototype formulations for an optimized protection against blue light, as it is the blue light components of the sun that cause severe pain to Charlotte's skin.

Did you develop Charlotte's cream in close collaboration with her dermatologist?

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 the unique cosmetic sunscreen developed specifically for the needs of Charlotte’s skin. During the development of the cosmetic sunscreen solution, the team closely collaborated with Charlotte's doctor, Prof. Marquardt, who is an expert in pediatric medicine and rare metabolic diseases at the University Hospital in Münster, Germany (UKM).

How did you learn about Charlotte?

Charlotte's parents were actively looking for someone who could develop a sunscreen specifically tailored to Charlotte's needs. Prof. Marquardt and Beiersdorf came in contact through a friend of Charlotte's family.

Whom can you contact if you have a child with EPP who needs help?

EPP Competence Center at the University Hospital in Münster:

Univ.-Prof. Dr. med. Thorsten Marquardt
Universitätsklinikum Münster
Klinik für Kinder- und Jugendmedizin
Allgemeine Pädiatrie
Albert-Schweitzer-Campus 1
48149 Münster
Tel. 0251 / 835-6494
email : anja.wolf@ukmuenster.de
A photo of a unique and innovative cosmetic sunscreen which helps protect Charlotte’s extra-sensitive skin.