SINCE the age of nine, Lorraine Valentine has been chasing her own shadow.

For Lorraine suffers with a rare and debilitating condition, known as EPP (erythropoietic protoporphyria) where exposure to sunlight can cause severe burns on her skin.

This means she is constantly seeking shelter from bright light.

The Bournemouth mother-of-four, who was diagnosed with the disease at the age of nine, says the condition has condemned her to a life in the dark.

She said: “I’ve had to negotiate my life, looking after my two boys and two girls around darkness.

“It’s hard even to do the most simple things that most other people would take for granted, like dropping the kids at school or going for a walk in the park.”

The condition also causes pain, swelling and scarring and in some cases can result in hospitalisation.

“Even supermarket shopping has its challenges,” said Lorraine.

“In the past I’ve been struck down by attacks due to the reflections from the white supermarket walls and flooring.”

Now, at 42 years of age, Lorraine may be able to enjoy her first summer thanks to a new drug developed for EPP sufferers.

Scenesse, developed by a small Australian pharmaceuticals firm called Clinuvel, has given sufferers of EPP hope of some relief from their symptoms.

After extensive clinical trials, the drug was recently given approval for use in exceptional circumstances by the European Medicines Agency (EMA).

Scenesse is the first treatment ever to have been developed for EPP.

The drug – the first approved from a new family of drugs known as melanocortins – acts as an anti-oxidant and activates melanin in skin, providing patients with a biological barrier between their skin and the various wavelengths of light which trigger their reactions.

Lorraine said: “I’m excited Scenesse will now be available on prescription and I’m hopeful of the opportunities it can offer my family.

“To literally bring light into my life and that of my family would make such a difference to our day-to-day activities.”