By Jane Elliott
Steve mainly wears shorts because trousers are difficult to fit
Getting ready for bed one night, Steve Marples noticed his left leg was significantly larger than the other.
Although suffering no pain Steve, now aged 33, from Sheffield worried that he had broken his leg playing football.
Doctors were initially mystified, thinking it could be a blood clot.
A decade later after a couple of misdiagnoses he was finally diagnosed with lymphoedema.
Lymphoedema is swelling of limbs and body due to the accumulation of lymph - a colourless fluid which forms in the body naturally.
Normally it drains back into the blood through a network of vessels and lymph nodes. But if the drainage routes become blocked or damaged lymph accumulates in the tissues and swelling occurs.
Steve does not know why he developed lymphoedema, but his leg swelled to twice the size of the other - making buying trousers impossible.
"I have to get three pairs of jeans and go to a local seamstress who cuts out panels and makes two pairs. I have a right problem," he said.
"I can't wear a suit off the peg and to get one made would cost a fortune. So I am either left with this or wearing clown trousers where everything is baggy - it is a bit of a pain.
"My leg has got about six litres extra on it - so the weight of it is causing me problems. It is like lugging around two or three coke bottles on one leg.
Steve's left leg is twice the size of his other
"Even though I've always been fairly positive and outgoing, it was difficult at times not to blame my leg for everything that didn't go right."
Lymphoedema can be a difficult condition to manage.
Steve has to take daily antibiotics in a bid to prevent cellulitis - a tissue infection - which has already led to a couple of hospital stays.
He is now responding well to treatment and the swelling has reduced by a third and he hopes he will see further reductions.
But he says that despite the number of sufferers and the seriousness of the condition that few seem to know about it.
"If I am wearing shorts people will say to me at least five times a day 'what have you done to your leg mate?' he said.
"Many's the time I have said I have broken it and they look at me a bit quizzically as if to say then why am I walking on it, but if you say you have lymphoedema then they haven't got the foggiest.
"I think I have said hundreds and thousands of times that it is a problem with the lymph gland and I don't think anyone has given me anything other than a blank look.
"I don't think anyone knows what it is."
Lack of information
Lack of awareness is not confined to the public. Experts warn that diagnosis and treatment of the condition by medical experts are often poor too.
Cheryl Pike, chair of the British Lymphology Society and specialist physiotherapist, said diagnosis needs to be improved as there are many things that can be done to ease the condition.
"Some with the condition are told that nothing can be done to help and many doctors are sceptical about treatment for lymphoedema as well as confusing the condition with obesity or simple skin infections," she said.
Primary lymphoedema develops as a result of a fault within the lymphatic system itself. It can affect men women and children of any age
Secondary lymphoedema is the result of damage to the lymphatic pathways. This may be the result of treatment for cancer, surgery or radiotherapy, or as the result of infection, injury, burns or other trauma affecting the lymphatic system
Lymphoedema can be difficult to treat, but there are things that can be do to ease the condition
"It is important that we raise awareness of this condition amongst the healthcare professionals, particularly GPs, so that they can diagnose the condition quickly and help patients get access to the right treatment."
There are at least 100,000 people with lymphoedema in the UK and Ireland and treatments vary greatly.
But Cheryl said there was plenty that could be done for people with lymphoedema such as moisturising, massage, gentle exercise, compression stockings and bandaging for the most severe cases.
Steve says he has benefitted greatly from specialist help.
"It was great. The clinic gave me compression bandages, which stretch from my toes to my groin," he said.
"They also told me to put my feet up whenever I could and gave me special creams to reduce the risk of infection and moisturise the skin, which gets dry and flaky.
"I am a bit angry it took so long to refer me though."
To try and address the lack of awareness two guides have been launched by charities to flag up the key points GPs and patients need to know about the condition. A dedicated website has also been launched.