Woman with rare disease battles through triathlon

A WOMAN from Rotherfield Peppard has completed a triathlon a year after being diagnosed with a rare liver disease.

Ginny de Haan, 63, was told she had autoimmune hepatitis in July last year and wants to raise awareness of its symptoms.

Last month, she completed the Dorney Super Sprint Triathlon and raised more than £1,000 for the British Liver Trust.

Mrs de Haan said: “I had the acute version of the disease so I became very ill very quickly.

“It started a couple of months beforehand with little things like achy joints but didn’t connect it to liver disease straight away.

“I then turned a funny colour. It looked like I had had a nice spray tan but, as it progressed, I turned orange and I looked like I had a very bad spray tan.”

Mrs de Haan was taken to the Royal Berkshire Hospital and then on to the specialist liver unit at the Royal Free Hospital in London.

She said: “It was awful wondering what the problem was. Because I have a rare version of the disease for a long time they were struggling to find out what was wrong with me.

“I have the seronegative version of autoimmune hepatitis, which only 10 per cent of sufferers have, so I was coming up negative on all the tests. Finally, after a biopsy at the London Free, they managed to work it out.”

Mrs de Haan, who lives with her husband Valentine, 67, a retired officer with Thames Valley Police, said she has always been an active person, so it was a shock when she was rushed to a specialist hospital.

She said: “My husband provided me with wonderful care and would travel to London to be with me every day through what was a very scary time.”

Mrs de Haan was initially told that if they could not manage to reduce the inflammation in her liver, she would need to have a liver transplant, but she is now being treated with steroids and immunosuppressants.

She said: “I was immensely relieved to be diagnosed and although it’s a lifelong condition the treatment is very simple. It could have been a lot worse.

“While I had an acute version of the condition for many people it can be a silent thing and they won’t pick up on the symptoms causing permanent damage to the liver.”

Mrs de Haan, who previously worked for Slough Borough Council, has been a governor at Peppard Primary School, which her daughter Melissa attended, but is having to step down due to the side effects of her condition.

She said: “That’s the sad thing about it, it can be a bit erratic and can flare up at certain points, so I have to be careful of how much I take on.

“Six months after being diagnosed I realised that I was still terribly tired because of the combination of medication and adjusting to having a lifelong condition.”

Mrs de Haan said she realised the need to look after herself and so decided to challenge herself to complete a triathlon.

She began training at Caversham Lakes in readiness for the event at Dorney, which comprised a 450m swim, 10km cycle and a 2.5km run.

Mrs de Haan said: “The swimming was one of the biggest challenges for me because I am not a very strong swimmer.

“I haven’t really done a lot of open water swimming before, but I love it. It’s very different from swimming in a pool.

“I am cautious of swimming in the river because they tend to be dirtier, and my condition means my immune system is not as strong, but lakes tend to be a bit cleaner.

“I could do all of the disciplines separately but the big challenge is putting them all together. I had real jelly legs after the biking, which made it hard.”

Mrs de Haan completed it on what was the UK’s joint hottest day of the year with temperatures reaching 32.2C in some areas of the country.

“It was so hot that the lake was actually warm.” she said. “It was so incredibly hot that after I finished the biking, I had a big bottle of iced water which I threw over myself instead of drinking.

“It was a huge challenge, especially in the heat but I finished it and my husband ran the last 100 metres with me.”

Mrs de Haan asked for sponsorship and raised more than £1,000 for the British Liver Trust.

She said: “They do an amazing job. They provide things like mobile liver scans and raise awareness of the symptoms and importance of early detection.

“There are so many different types of liver disease and with the promotions from the trust it is becoming more topical.”

For more information, visit
britishlivertrust.org.uk