While many Australians know somebody who lives with lymphoedema, a far smaller number of people actually know what the condition is called, or understand that a persistent swelling is something that should be managed.
Dr Helen Mackie, a lymphoedema practitioner and active member of the Australasian Lymphology Association and the recently formed Lymphoedema Action Alliance, told the AJP that some of these consumers can be spotted buying compression stockings in pharmacies, but not having their problem investigated further.
“One of the problems is the word itself,” Dr Mackie told the AJP. “Often when people hear the word, they don’t recognise it, or know what it is – it’s often confused with lymphoma.
“However, if you say, ‘the swelling you get after breast cancer,’ almost everybody knows someone who’s had it.
“I was talking at a Rotary dinner recently and everyone said, ‘we’ve never heard of lymphoedema’. But on going around the table of 10, three of the men there had wives who had had breast cancer and had lymphoedema.
“It’s one of things where people know it if you explain what it is. It’s for that reason that we’re trying to get the definition down to ‘a swelling that stays’ – if a swelling stays for longer than three months, you need to consider lymphoedema.”
Compression stockings are aimed at people who don’t ordinarily have a swelling, but who are at short-term risk of developing one – people about to take a long-distance flight, for example, who want to help lower their risk of a DVT.
“The standard size of many of our patients isn’t the standard size of these stockings,” Dr Mackie says. “And you need to know why people are buying them. If they already have a swelling, they probably shouldn’t just put a stocking on over it.
“One problem for us is that people have often put themselves into stockings, it’s very uncomfortable and they’ll come to us and say they don’t want to wear them.
“But if the swelling is bad, they really need to have treatment before they get into stockings, otherwise they will do more damage.”
This month and in March, the Australasian Lymphology Association is running the Iced Tea Party campaign, aiming to raise at least $35,000 towards research and education for early diagnosis and treatment of lymphoedema.
“We want to make people more aware of the condition, and making doctors more aware of it, too, because it’s not a condition that’s mentioned a great deal in medical training,” says Dr Mackie.
“Pharmacists can help by directing people’s attention to the Lymphology Association website where there’s a lot of information. Or they can have some iced tea out, as a fun way of introducing the topic – often something like this can just jog your memory and remind you that your Mum’s got swollen legs and the swelling hasn’t gone away – maybe it’s time to investigate that, rather than just accepting it as normal.”
Customers also may not be aware that lymphoedema doesn’t have to result from cancer treatment.
“There are two other groups that we see a lot of: primary lymphoedema, which occurs because of an underdeveloped lymphatic system, and that can happen all the way through life,” Dr Mackie says.
“You can be born with it, or it can develop in your teenage years, during pregnancy, menopause or in old age.
“Another group we see a lot is where the lymphoedema is associated with peripheral vascular problems after blood clots, or where in old age, people are sitting a lot and develop a chronic swelling. They’re often given diuretics and things like that, but often there’s a mechanical problem instead where they lymphatic system isn’t working well enough to take the fluid out of tissue, or the system’s been put under too much strain.”