text: A mother-of-four calls herself the 'real life vampire' as she has a rare medical condition that makes her allergic to the sun. Lorraine Valentine suffers from the rare disease erythropoietic protoporphyria (EPP) which causes her skin to burn and become unbearable itchy when she is exposed to sunlight or UV light. A holiday abroad left the 42-year-old in hospital for six days, as the heat caused her entire body to swell. Her sun allergy means she has to keep herself completely covered, as even a small dose of sun on her skin leaves her in pain. In summer, everyday tasks like picking her children up from school or going to buy some milk become extremely difficult. Lorraine Valentine, 42, calls herself the 'real life vampire' as she has a rare medical condition meaning she is allergic to the sun . Miss Valentine suffers from erythropoietic protoporphyria (EPP) which causes her skin to burn and become unbearable itchy when she is exposed to sunlight . Now, as temperatures in the UK are set to soar, she is desperate for a drug that can help her. Miss Valentine, of Bournemouth, said: 'It's always worst when the sun first comes out because I have no time to adjust. 'I have to pull the curtains closed and have to have a fan on, as any heat is painful.' She was first diagnosed with EPP, a rare blood condition which attacks the liver, when she was nine. The condition – which is incurable - is caused by a build-up of a chemical called protoporphyrin in the blood. As blood passes through the skin, the protoporphyrin absorbs the energy from sunlight and this sets off a chemical reaction that can slightly damage surrounding tissues. The nerve endings in the skin interpret this as itching or burning pain, and it can also cause the tissues to swell up. For Miss Valentine, even tasks like going to the supermarket are painful, as UV light reflects up from the floor, burning her skin. EPP occurs when there is a build-up of a chemical called protoporphyrin in the blood. The skin is more sensitive to longer ultraviolet wavelengths (UVA) and to visible light. It is caused by a shortage of an enzyme in the body that normally converts the protoporphyrin into a substance called haem. As a result of this enzyme deficiency, protoporphyrin levels build up in the blood. As . blood passes through the skin, the protoporphyrin absorbs the energy . from sunlight and this sets off a chemical reaction that can slightly . damage surrounding tissues. The . nerve endings in the skin interpret this as itching or burning pain, . and if the blood vessels are affected, they can leak fluid, causing . swelling. The condition is hereditary and symptoms include developing tingling, itching and burning when exposed to sunlight. There is currently no cure. Source: British Skin Foundation . 'From March to November I completely cover up when I'm going to pick up the kids,' she said. 'When it's boiling hot and I'm wearing boots, jeans, a big cardigan, scarf and hat, I do get funny looks off the parents. 'They think I'm a bit strange. 'I try and do normal things and not let it affect me.' Her children. Chloe, 18, Elisha 14, Ben, 12 and Josh, 10, are understanding, but the family lives very close to the beach and so Miss Valentine feels guilty she cannot join them when the weather is good. She said: 'It was difficult for them growing up. 'When I was crying because I was in so much pain, they couldn't even hold my hand. 'The slightest touch puts me in agony.' 'They're understanding, but the beach is just ten minutes away. I should be on the beach with the kids, but I can't. 'I'm just trying not to get sunned on. 'Even driving somewhere, my arm is in pain from the sun coming through the window. 'I don't know what I'll do when it gets even hotter.' In June last year, Miss Valentine decided to take her children on a summer holiday to Lanzarote, as she didn't want them to miss out on this right of passage. She bought special UV protection socks to block out sunlight, and booked an expensive apartment right near the pool. She hoped this would mean she could stay indoors if she needed, but could watch her children enjoy swimming. She found the only way she could enjoy the holiday was to stay indoors, emerging at night to go to the beach and explore the town in the dark. 'We went in June because I thought it would be less hot, but how wrong I was,' she said. Last June, Miss Valentine went on a holiday to Lanzarote but was hospitalised for six days afterwards, as the sun irritated her skin. She must wait until the sun sets before going to the beach near her home (pictured) Miss Valentine, pictured on holiday with her 10-year-old son Josh, said her children are 'understanding' but when she is crying in pain they are unable to hold her hand, as any touch puts her in agony . 'Even though I stayed in the shade, I ended up being covered up and in pain wherever I went. 'I had to borrow a fan to sleep and spent most of the evenings in the toilets of the entertainment area putting cold water on my burning feet. 'The kids would give me the ice from their drinks to put on my feet.' When they flew back a week later, her ordeal wasn't over. She said: 'On the plane I cried, trying to sit there for four hours with the pain of the burns. I was in agony. 'I had the air hostesses get me ice in the end. I was in such pain, I was crying and so upset. 'I went through security and left the kids while I raced to get some cold water and some paper towels to try and ease the pain. Miss Valentine, pictured (left to right) with daughter Chloe, 18, Ben, 12, Josh, 10 and Elisha, 14, is now fundraising for other sufferers of the disease . Five hours later, when the family landed in the UK, Miss Valentine was admitted to hospital. She was kept in for six days as her liver wasn't functioning properly; the condition can cause liver damage in severe cases. Now, she is running the London Marathon for British Porphyria Association to help raise funds for other sufferers of the disease. She is hoping an experimental drug called Scenesse will bring hope for her and other sufferers. The drug acts as an anti-oxidant and activates melanin in skin, providing a barrier between the skin and wavelengths of light that trigger the burning and itching. 'I'll battle for this,' she said. 'I've suffered for so long and been through so much. There needs to be treatment available.'
target: Lorraine Valentine, 42, suffers from erythropoietic protoporphyria (EPP)
  Rare condition means she burns, itches and swells in sunlight or UV light .
  Was hospitalised for 6 days with burns after a family holiday in Lanzarote .
  Has to cover herself completely as  small amounts of light leave her in pain .