A MAN with a rare condition which causes him intense pain when exposed to sunlight is hoping to benefit from an experimental treatment if it is rolled out in Wales.

Since birth James Rawnsley has suffered from erythropoietic protoporphyria (EPP), a disorder which causes intense pain to sufferers when they are exposed to sunlight or artificial light.

The condition, which only affects around 20 people in Wales, is a result of enzyme deficiencies in the blood.

Mr Rawnsley, from Caldicot, is forced to wear a hat, coat and gloves to stave off the pain but finds himself subject to taunts and “snide remarks”.

The father-of-two said the condition is both “physically and psychologically” damaging to himself and his family.

“Imagine burning yourself on the iron or pouring boiling water on your skin, now imagine that level of pain on every part of your body that is exposed to the sun,” he said.

“That is my day, every day, not just in the summer, but even in winter.

“My children are being damaged by this condition. Even though they don’t have EPP they are scared to go out in the sun because it hurts Daddy.

“They should not be suffering just because I am.”

In 2012, Mr Rawnsley underwent the first set of trials for a new treatment called Scenesse, developed by Australian pharmaceuticals firm Clinuvel.

The treatment involves a soluble implant the size of a rice grain being inserted under the skin, which in turn produces melanin to protect patients from harmful light.

Mr Rawnsley, who works as a sales manager at George Street Furnishings in Newport, said his life changed during the trial.

He said: “I went out of the house in shorts and t-shirt, I sat in the sun, I had the best year of my life.

“I could spend hours out in the sun without pain for the first time.”

Mr Rawnsley said the treatment holds a key to a “normal life” and fears that he may have to give up his job due to EPP.

In a submission to the AWMSG, he said: “This drug is life changing, not just for me, not just for my family, not just for my employer but for everyone affected by EPP.

“If I had cancer you would give me Chemo. I have EPP. What do you give me?

“You have the power to stop this pain, to stop this hurt and to stop this mental torture. The power to give me a life.”

The AWMSG, which advises Welsh Government on whether medicine should be routinely available in NHS Wales, has yet to decide whether it will recommend the medicine.

The medicine is on the National Institute for Health and Care Excellence (NICE) “highly specialised technology process”. AWMSG does not normally appraise a medicine if that same medicine is on the work programme of NICE.

However, appraisal can be made in some circumstances.

The AWMSG brings together NHS clinicians, pharmacists, healthcare professionals, academics, health economists, industry representatives and patient advocates.

AWMSG, acting in a strategic and advisory capacity, is an expert channel through which consensus can be reached on the use of medicines.