Lesley Connors is allergic to sunlight, but she is determined not to let her condition rule her life or spend her life indoors. Molly Lynch and Catherine Scott report.
When Lesley Connors joins thousands of runners pounding the streets of Sheffield in the Great Yorkshire Run she will be proving a point to herself and others.
Lesley is allergic to sunlight which means most of her training has to be done at night or early in the morning. Any exposure to any type of light means her skin becomes inflamed, she breaks out in a painful and itchy rash which looks like serious sunburn, but isn’t. She was struck down by the rare condition called solar urticaria, in her late thirties,.
It was while holidaying in France in 2012 that Lesley first began to show symptoms of the condition.
“I was OK one minute and the next I wasn’t. I’d been in Egypt the year before and had been completely fine in the middle of the desert,” says Lesley, a psychotherapist at Leeds and York Partnership NHS Foundation Trust.
“It was completely sudden. I’d been out and come back to the place we were staying and my skin turned bright red, I was itching all over.”
Solar urticariais can also strike under artificial light. When exposed, the skin cells of someone with solar urticaria release potent chemicals (including histamine), causing their blood vessels to open and fluid to collect within the skin.
Their skin feels itchy and has red patches, which may be swollen. These may look like weals or a nettle rash, and can take up to an hour to appear after exposure to light, then coming on quickly and settling within a similar period. There is no permanent change to the skin.
It is estimated that only three in every 100,000 people have solar urticaria. There is no known cause or cure for the condition which can occur at any time in a person’s life.
“What I have is so rare that there’s not a lot of research out there. The dermatologists haven’t been able to say why I have it,” explains Lesley.
“They don’t think its hereditary but I know my grandmother was allergic to sunlight, so maybe it is. Basically I can’t get light on my skin for more than 30 seconds. At first it was awful, I didn’t dare go outside. I was frightened about what would happen. You also do get funny looks when you’re wearing a scarf and jeans in the middle of summer, but when people ask me why I am so over dressed I explain it to them and they are either
“I found ways to cope and manage and that’s when I decided to do everything I could for my health.”
The 39-year-old, from Leeds, has been forced to adjust to a life of applying factor 50 all over her body every day, covering herself in thick clothing all-year-round and even avoiding sitting near windows.
Because she cannot be exposed to any sunlight she has to take Vitamin D supplements, the vitamin found in sunlight.
It is a particularly cruel condition for Lesley, a self-confessed sun worshiper.
“I love to travel especially to desert areas and love the sun. Now I go on holiday to Scotland,” she says.
But she is determined that the disease is not a sentence to life indoors and she will not become a victim. In fact, the diagnosis prompted a health kick which saw her shed five-and-a-half stone and she is now preparing to take on her biggest challenge yet, competing in this year’s Great Yorkshire Run.
“I have no control over this condition, but I decided that I did have control over other aspects of my health and so I decided to get fit. It started with walking, which I would do early in the mornings before the sun came up. The fitter I became the better I felt and the better prepared to deal with this condition.”
Lesley took advantage of dark winter nights to take up running, building fitness which made her able to complete Yorkshire Three Peaks walk with son George, aged 14. Preparation for the Great Yorkshire Run, a 10k race which takes place in Sheffield on September 28, involves a night-time running regime and constant cover, although Lesley says if she is careful and applies factor 50 sunscreen even on the rainiest of days she is able to be more flexible in her training. She is also planning to run the Great North Run
“I will have to wear a lot of clothes. It’s not ideal when you’re already sweating but actually the special UV protection wear looks pretty similar to running gear so I don’t get as many funny looks as when I am walking around normally in the sunshine fully dressed with a hat on.”
To show her support to those with similar conditions, Lesley is fund-raising for the XP Support Group, which offers help to children with xeroderma pigmentosum. XP is a hereditary condition characterised by extreme sun sensitivity, leading to a very high risk of skin cancer. Eye problems are also common.
Neurological problems- including learning disabilities, hearing loss, neuromuscular degeneration, loss of some reflexes, and occasionally, tumors in the central nervous system also affect XP sufferers.
“There are very few support groups out there for people with extreme sun sensitivity, in fact the XP Support Group is about the only one, although there is Facebook group which I do use. XP is a far more serious condition than mine. I wanted to show the children that you can live a normal life despite having this condition.”
Anyone who would like to sponsor Lesley can email her on firstname.lastname@example.org