Kyowa Kirin illuminates rare disease XLH with glowing digital makeup

Sonia Sr, who has rare genetic disease X-linked hypophosphatemia, was "painted" with digital makeup by well-known artist James Mac Inerney for Kyowa Kirin's new awareness campaign. (Kyowa Kirin)

Japanese pharma company Kyowa Kirin is literally illuminating awareness for rare genetic disease X-linked hypophosphatemia (XLH) in its newest campaign.

The visually stunning effort illustrates the connection between phosphorus, an element known for its glowing properties, and XLH, which results from a lack of phosphorus in the body and causes abnormalities.

Kyowa Kirin enlisted renowned makeup artist James Mac Inerney to digitally apply glowing body paint on three people living with XLH.

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“We wanted to use a creative approach to deliver a campaign which really stood out. James was the runner-up on the second series of the BBC’s 'Glow Up: Britain's Next Make-Up Star.' As a result, the team working on the campaign felt that his experience, skill and creativity would be the perfect combination for this project,” Sajid Babariya, Kyowa Kirin’s vice president of rare diseases, said via email.

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While the original project plan was to use conventional cosmetics applied in person, the COVID-19 pandemic forced a change. After socially distant photo shoots, Mac Inerney spoke with the subjects to get an idea of their backgrounds. The designs were created, and then he worked with a digital design specialist to digitally retouch the images onto the photos.

To draw even more attention to the project, Kyowa Kirin is working on a film featuring the people who took part in the campaign. It will also focus on how the digital makeup was created.

“We were able to capture the special moment when patients got to see their digital makeup designs for the first time,” Babariya said.

While non-life-threatening, XLH is a lifelong condition and is often debilitating. Patients' lack of phosphorus causes pain in the bones, muscles, joints and teeth, and people with XLH generally suffer from short stature and possible hearing loss.

Due to the rarity of the disorder, many people go undiagnosed, as nonspecialist doctors may not be aware of the signs and symptoms. There is also a misconception that it is only a childhood disease, which can make it difficult for adults to find specialists to help manage the problems associated with XLH. 

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Along with rare disease biotech partner Ultragenyx, Kyowa Kirin was granted FDA approval in April 2018 for Crysvita, which is used to treat XLH in patients 12 months and older. The drug is administered every two weeks and is dosed by the patient’s weight. The estimated annual cost for Crysvita is $160,000 for children and $200,000 for adults.