Published Date: 23 February 2007
Source: Peterborough ET
‘I think I was given this because I can help others’
Trudy Lapinskis is 45, and lost her leg to elephantiasis, a hideous condition which disfigures about 120 million people globally. And yet she is determined to not let her illness and the pain that she suffers because of it ruin or run her life.
Elephantiasis produces massive discoloured swellings on the limbs. The condition, which is what John Merrick, as depicted in the 1980 film The Elephant Man, had, is usually caused by a parasite which breaks down the body’s lymphatic system.
Trudy, from Whittlesey, doesn’t have lymphatic filariasis. Her elephantiasis is the result of an infection which is thought to have set in after she banged her back on a table and developed complex regional pain syndrome (or reflex sympathy dystrophy – RSD).This is a chronic pain syndrome that is very difficult to diagnose and treat, as well as being extremely painful.
She went from doctor to doctor for help, and after one lanced a swelling on her foot an infection set in and Trudy’s condition worsened into elephantiasis.
Her foot swelled up and became infected until doctors
told her that she had to choose between dying and losing her leg.
Her left leg was amputated, and the elephantiasis has spread to her other leg and arms. She is still in constant pain, and gets around in a wheelchair.
But Trudy, who has recently been the subject of a BBC1 Inside Out show, stares her difficulties hard in the face and refuses to give in to negative feelings.
She said: “I’m very lucky because I just don’t get depressed. I never think about suicide. I would never, ever kill myself, because there are always people who are worse off than you.
“There are people who are told they are terminally ill. I can’t imagine what it would be like to be told that.
“I am in pain, but I have my family and my friends and I just focus on other things. I don’t sit around thinking about myself.
“I think that I was given this because I am the kind of person who can cope with it, and because I can help other people. I haven’t had an easy life, my dad died when I was 12, but I can deal with my life.
“I remember once when I was very small, I trapped my finger in the school gates. I thought ‘there’s a lot of blood,’ and I had to have stitches put in. I’ve got an inner strength.”
Trudy runs the RSD website http://www.rsdhelp.co.uk, and is campaigning for people with RSD to be diagnosed quickly.
It was three years before she was diagnosed and, during that time, her leg was deteriorating. She thinks that if RSD is diagnosed quickly, recovery can be easier and quicker.
“I am working with my MP, Malcolm Moss, to raise awareness, and get early diagnosis and early treatment,” she said.
“And I receive about 100 messages a week through my website. People who have the condition and don’t know what to do, and people with the condition who are depressed. I try to help them.”
She says that she takes one day at a time.
She said: “I try to enjoy my life as much as I can.
“I went to an RSD conference in America once, and I was asked to leave by a doctor, who said that I was upsetting other people there because of what I looked like.
“And I did an article with a magazine once, and they ran a picture of my foot with the caption ‘Is this the most shocking picture you have ever seen?’
“People aren’t always sympathetic, but I consider myself to be a strong person, and one who can help other people going through difficult times.”
Trudy said that while she was in hospital waiting to have her leg amputated, an 18-year-old girl was also waiting to have fluid removed from her stomach.
“She was very upset because her family weren’t with her, and I said ‘I know I’m not your mum, but I’m here with you and I’m thinking of you. I’ll tell your mum you’re OK when she comes in.
“Afterwards, she sent me a card thanking me, saying: ‘You sometimes meet people in your life who…’, that kind of thing, and that made all the difference to me. I was put here to help other people like that.”
For more information, visit www.rsdhelp.co.uk.