According to a story from The Sun, Alex was just two months old when he first experienced symptoms of xeroderma pigmentosum. His parents took him out to the park and his face began to blister within minutes. The disease causes his skin to be completely intolerant to UV light, and he must be completely covered in order to avoid damage.
About Xeroderma Pigmentosum
Xeroderma pigmentosum is an extremely rare skin disorder in which the patient has very limited ability to repair damage to DNA caused by sun exposure. This genetic disease has been linked to nine different mutations of the NER gene. Symptoms of the disorder include corneal ulcers, extreme skin blistering and sunburn upon brief exposure, dry skin, scaly skin, abnormal black spots on the skin, limited hair growth on legs and chest, skin growths and skin cancer, and heavy freckling. The disease can also cause intellectual disability, poor coordination, and hearing loss. Life expectancy is generally reduced, especially without protective measures, as patients are at elevated risk of cataracts, brain cancer, and skin cancer. In severe cases, patients do not survive past their twenties. The disease is most common in Japan. Treatment primarily involves sun avoidance and sunscreen. To learn more about xeroderma pigmentosum, click here.
A New Solution
Alex is 25 years old now, and his mother Anna designed a special visor for him to use outdoors. He used it for much of his life, but the visor tended to get hot and uncomfortable; it also distorted his vision. Alex has had difficulties with learning and hearing, but a new replacement for his visor could make going out a little bit easier for him.
As part of the show Inventing the Impossible: The Big Life, inventor Zoe Laughlin was tasked with this project, and she created a prosthetic using imaging from Alex’s face. In this way, Alex can go outdoors without a conspicuous and awkward face shield and can instead more closely resemble himself.
When trying the mask for the first time, Alex found it far more comfortable than the visor that he was used to; the prosthetic is made out of a special 100% UV blocking silicone. This innovative solution is intended to change his life for the better.