Lymphoedema stories: people managing the challenge
Liz's storyLiz Dart learned early on how to put up with children staring at her and hearing comments whispered behind her back — 'Look at her ankles!'
Such is the challenge of living with lymphoedema, an incurable condition that swells the legs and arms. At its worst the condition is called elephantiasis — a cruel reference to the grotesque size of untreated, swollen legs. But where elephants have wrinkles lymphoedema patients feel like their skin in going to split open.
'It can be so bad you just break down and cry,' says Liz, an active mother of 2.
What makes it worse is being told 'nothing can be done about it.' 'That is so untrue,' says Liz — and she is supported by a growing body of professionals, from doctors and physiotherapists to podiatrists and geneticists, who are specialising in this little known condition.
Liz has become an amateur expert on lymphoedema after spending years looking for a diagnosis and then struggling to locate adequate treatment for her self. She helped set up the Lymphoedema Association of Victoria which brings together patients and medical professionals to give advice and support to patients.
Now men, women and children with lymphoedema can attend clinics in major hospitals, buy imported compression garments, and get advice on treatment and on therapists from dermatologists to dietitians and plastic surgeons.
Liz acquired lymphoedema after her leg was injured in a car accident and her lymphatic system was damaged.
The lymphatic system is a system of small vessels (like the blood circulation) that channels lymph from the tissues, through the lymph nodes and back to the bloodstream. In lymphoedema, the lymphatic system fails to process the liquid and it accumulates in the limbs. If patients don't treat the disorder with massage, exercise and compression garments they risk enormous swelling that can restrict their mobility.
Liz is one of the estimated 300,000 Australians who have lymphoedema. Many get lymphoedema as a result of accidents or surgery on their armpits, breasts or groin — one-third of breast cancer patients can get lymphoedema from surgery or radiation therapy and men are at risk through prostate and bowel operations.
Nola
Not all lymphoedema is acquired, however. Some people have primary lymphoedema, where they are born with it. Nola Brown helps to run a support group for mothers of young children with lymphoedema, some of whom have had the disorder from birth, like toddler Joe, aged 3.
Nola's son has lymphoedema and is now 15. He's experiencing the typical challenges of teenage years, with the added burden of swollen, aching limbs.
'It can be hard for him to explain why his leg is all puffed up,' says Nola, 'and to be one of the crowd when he can't run around all day or dance all night.'
With 1 in every 6000 babies born with lymphoedema, according to South Australian geneticist Professor Eric Haan, there is strong interest in the genetic origins of hereditary lymphoedema. Research points to faults in the FLT4 gene on chromosome 5, but Professor Haan says we are on the edge of a breakthrough that will implicate at least one other gene in the disorder.
Mary D'Elia
As the CEO of a community family health agency Mary D'Elia knows the challenge of keeping lymphoedema hidden. She has to put business first and keep her personal issues private.
'I spend a lot of time in meetings or on my feet addressing an audience,' Mary says. 'My legs get very tired and there are days when I have difficulty putting on a smile, but I must because I have a job to do.'
Mary is lucky these days: she can find clothes and shoes that are comfortable and as well suited to the board room as they are to her swollen limbs.
'In the early days — it took me years to get a correct diagnosis — I had to wear men's sneakers,' she said. 'One foot was very swollen and I wore sneakers to fit that foot: the other shoe had to be padded with tissue paper. It was not a good look for the office.'
Mary says the biggest challenge is working closely with people, 'You have to put on a brave face. Even if I am tired, if I am talking to a Rotary meeting or sitting around a table, I have to plough on. I can't expect people to understand that I have a chronic condition because on the outside I look mobile and healthy.'
The irony for Mary, who is also President of the health support group, Lymphoedema Association of Victoria, is that the more she tries hard to look healthy, the less much-needed sympathy and support she gets from those around her.
'This can be a very isolating condition,' she says. 'That's why I put a lot of effort into Lymphoedema Association of Victoria so that other patients can get some practical and moral support from patients and medical people who do understand the challenges we face.'
Last Reviewed: 14 March 2002
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