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Tiri is Allergic to Light

September 30, 2019

ONE IN 1.5 BILLION. Those are the odds of getting a blood disorder so debilitating it makes you allergic to light. Sunlight, artificial light, any light. What happens if you’re exposed to light? It burns your skin, at a level akin to having boiling water poured over you. It can also damage your organs and there’s no known cure.

That’s what a little Waikato girl is currently enduring. Her name is Tiri, and we’re going to help her out by building her a light-sensitive outdoor playhouse.

Tirion (Tiri) has been recently been diagnosed with an extremely rare and potentially life-threatening blood disorder called Erythropoietic protoporphyria (EPP) of which there are only about 5,000 people worldwide. In short this means that Tiri is allergic to visible light (blue light) including sunlight, light coming through the windows and artificial light. There is no known cure or effective pain relief currently available.

The condition causes Tiri to become extremely photo sensitive to light, damaging her liver, skin and potentially other organs. This means that Tiri must be fully clothed at all times including sock and gloves and light exposure must be kept to a minimum which requires Tirion to stay in doors and away from window most of the time. She is fearful of kids running in to her and rubbing her skin, but by far the worse symptom is the sensation of her skin burning, doctors describe this pain “as intense as if pouring boiling over yourself”. This burning can last for hours up to weeks with no effective pain relief available. Tirion often has a shower in school as water really is the best pain relief available.