IMAGINE being ill for more than 30 years and never having a name for the disease that afflicts you. Carole Iles, 59, has spent all her adult life struggling to overcome a debilitating illness and, until four years ago, had no proper explanation for what was wrong. She has Hughes Syndrome, often known as “sticky blood”, which can cause clots. London doctor Graham Hughes and his team first described the condition in 1983. Carole’s illness came to light when she had her first child, David, at the age of 24. Carole, from Spennymoor, County Durham, explains: “David was born six weeks early by Caesarean Section as I’d started to miscarry. “Afterwards my legs started to clot. I was given the anticoagulant drug Warfarin and told this sometimes happened after Caesarians.” Two and a half years later when Carole’s second baby, Jane, was born she was again rushed to hospital, her left leg so blue and swollen that doctors discussed amputation. She says: “I was in an absolute panic.” Her leg was saved but Carole was in hospital for three months while her mum-in- law cared for the children. Carole says: “It was the old Darlington Memorial Hospital and I could hear babies upstairs in the nursery crying and I would cry too because I couldn’t see mine.” More thrombosis followed. Between 1974 and 1982 Carole had dangerous clots on her lungs at least three times and would cough up blood. She was often chronically tired and suffered headaches. She says: “I crawled from one day to the next. The doctors just said, ‘We don’t know what it is’.” In 1982 Carole was prescribed Warfarin long-term and she has been on it ever since. But, as if Carole hadn’t had enough health problems, seven years ago she discovered she had breast cancer and underwent a mastectomy. After the operation she experienced yet another clot on the lung which led to blood tests and X-rays. She says: “Around four years ago I went to my GP surgery and saw a trainee who said, ‘I see you have antiphospholipid syndrome’, the proper name for Hughes. They must have found it during tests after my mastectomy and it was in my notes but no one had ever told me.” On the internet Carole found the Hughes Syndrome Foundation — the HSF — and suddenly Carole realised all her other complaints, from chronic fatigue to memory loss and headaches were part of the same condition. Carole would like to see more awareness-raising within the NHS. She says: “If you are ill a lot people lose patience with you and put you down as a hypochondriac. It would have been good to have had a name for what was wrong with me.” HSF spokeswoman Kate Fitzpatrick says: “The good news is that, once diagnosed, Hughes Syndrome is potentially treatable. The bad news is that, as the condition is relatively new, it often goes undetected or misdiagnosed.” --------------------------------------------------------- Who is affected by Hughes Syndrome? HUGHES SYNDROME is thought to affect one in 500 people. It may account for one in five cases of Deep Vein Thrombosis, one in five strokes in people under 45 and one in five recurrent miscarriages. Added to that may be the as-yet unknown number of migraine, Alzheimer’s and Multiple Sclerosis patients who actually have Hughes Syndrome. HSF is based at London’s St Thomas’s Hospital, telephone 0207-188 8217 or visit the website at www.hughes-syndrome.org | 
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