Reporter RICHARD GLADSTONE speaks to those coping with rare diseases and finds that sufferers are often left to struggle on alone
LIVING with a rare disease can be isolating both for the sufferer and their family.
Often there can be little or no support for people with such conditions and it’s left up to them to rebuild their lives.
Ray Laban, of Pevensey Road, St Leonards, had his life turned upside down after he was struck down with viral encephalitis in February 1991, and 20 years on has still not fully recovered.
He had his own antique business for 12 years before he was struck down with the disease. It put an enormous strain on his marriage and he and his wife, who has since died, split up.
Mr Laban, now 51, was forced to give up his business and said the condition, which affects one in 850,000 worldwide, changed his life forever.
There is no local support group so Mr Laban relies on information from the Encephalitis Society, a Yorkshire-based charity which looks after sufferers.
He said: “I have not met anyone else with this condition as it’s very rare. There is no support group locally and I wouldn’t have the energy to set one up because I only work 20 hours a week and get fatigued every day.”
Mr Laban’s condition started off with headaches which became more frequent.
“I had been suffering from increasingly severe ones for about a year beforehand,” he said, “and one day I just collapsed and fell down the stairs before crashing through the door as a result.”
It was only the start of his nightmare as he spent more than two months in hospital in excruciating pain.
He said: “It was like a bad dream as I was very confused. I had swelling on the brain. As a result of this brain injury and illness I was prone to mood swings and my wife couldn’t cope with it. It was a very difficult time for the both of us and eventually the marriage collapsed. My life fell apart.”
Mr Laban, who works for Mencap, put his condition down to stress.
He said: “I had run myself down to such a degree that my immune system was not working and much later on I discovered I had had contact with someone who was carrying the virus.”
Living with the consequences of his condition, Mr Laban has tried to get back on his feet. He enrolled at Hastings College and achieved an NVQ in Care before working for Mencap. He has also done voluntary work for charity, helping other people with learning disabilities.
But Mr Laban said he has never fully recovered.
“It’s been described as ‘having a monkey on my back’ and I have lost 60 per cent of my hearing on the left side. Down the years things have come back slowly but my memory is not as good as before and I have to write everything in a diary.”
There are more than 6,000 rare or little heard-of conditions, according to Rare Disease UK, a campaign group which supports patients.
Stephen Nutt, the organisation’s public affairs officer, said the problem was down to the NHS not being geared properly to deal with such patients.
He said: “There is a widespread lack of information and knowledge and that has knock-on effects from diagnosis right through to being able to provide adequate care.”
Last month Rare Disease UK published a report called ‘Improving Lives, Optimising Resources’, calling for more to be done to help patients.
It wants medical staff to be trained more in diagnosing rare conditions, personalised care plans to be made more available and a country-wide online portal to be set up about such conditions.
But in the meantime it is little comfort for singe mum Lisa Gardiner, whose six-year-old son has a painful rare disease.
Mason was diagnosed with Langerhans Cell Histiocytosis last October, a condition with causes tumours on the skull and spine. His mum said: “I get no support at all and have had to learn all about the condition myself. Mason also has been very poorly lately with an infection in the back of his throat. He has had enough and thought he was going to die.”
Ms Gardiner, who lives in Bexhill, has heard that two people in Hastings and St Leonards, a 19-year-old man and 13-year-old girl, have had the same disease, and is desperate to contact them for much-needed advice and support to help her through her ordeal.
She said: “It’s a really rare condition and it’s very frightening to find your child has holes in his skull. It’s not cancer because the tumours it causes are benign but it is a cancer-like disease - it’s caused by a problem with his immune system.
“There is no suitable counselling for children with conditions such as this and something needs to be done. I am a single parent on my own and you go through some sort of grieving process. It’s hard for the both of us because the condition is so rare.”
Mason undergoes chemotherapy every three weeks at The Royal Marsden Hospital and he recently had a biopsy of his skull. A community nurse goes out to treat the King Offa Primary School pupil every week as well.
“It has been very gruelling for him and an absolute nightmare for me - I have been to hell and back,” Ms Gardiner said. It would be so nice to speak to someone about it - you can talk to lots of people about cancer but this is different. I feel very alone.
“If these people could come forward or someone who knows them and can put me in touch with them, it would be such a big help for me. This disease can be cured but it can and does come back so it’s a bit like a guessing game.
And she paid tribute to her brave son: “Mason has been so resilient,” she said. “I think sometimes children cope with it better than adults because they don’t really understand what is going on but it has been awful.”
Anyone who has been affected by Langerhans Cell Histiocytosis can contact Ms Gardiner on 07564 897291.