A Sutherland Shire woman has started a local branch of a support group to help those suffering from a debilitating, chronic condition.
Anne Forster, of Lilli Pilli, formed the first lymphoedema support group in southern Sydney, under the umbrella of the Lymphoedema Support Group of NSW, of which she is a member.
The group supports people living with lymphoedema and provides information to improve their lives.
According to the Lymphoedema Support Group of NSW, many sufferers become isolated due to the nature of the long-term condition, which causes excess fluid to collect in tissue, resulting in swelling, or oedema.
The condition can occur anywhere in the body, but most often occurs in limbs, as a result of a primary or secondary condition, such as trauma caused by cancer treatment.
There is no cure and treatment comprises mainly of manual lymphatic drainage and the use of compression bandages and garments, which are expensive and must be replaced every six months.
While it can be managed if treated early, the condition almost always worsens, from swelling, to skin becoming fibrous or hard and brittle, causing pain and limiting mobility.
As it progresses, infection is more common and serious conditions, such as cellulitis or ulcers, can result. If untreated, it can progress to the more serious secondary lymphoedema disease.
Ms Forster developed lymphoedema after all the lymph nodes in her right arm were removed as part of breast cancer treatment in 2014.
She said learning she had developed the condition was as upsetting as her initial cancer diagnosis.
"It was equal to the shock of being told you have got aggressive cancer," she said.
Ms Forster admits it was "very depressing" to discover the condition had spread to her legs late last year.
"It is estimated that 20 per cent of people treated for prostate, breast, melanoma and gynaecological cancers can experience some form of lymphoedema," Ms Forster said.
"Treatment is focused on management and control with massage and compression garments. It can be expensive and demoralising.
"It affects you psychologically, it affects you socially, it affects your mobility and your self-esteem."
While she said new technology and research was providing better outcomes for newly diagnosed patients, trained lymphatic therapists cannot keep up with the increasing demand.
"Resources are limited and peer support is the frontline for sharing information, education and hope," she said.
However, she said new diagnostic tools and treatments were providing hope for sufferers.
"Self management is becoming easier with access to home massage pumps, velcro fastened garments to wear overnight or to replace daily bandaging during intensive therapy periods," she said.
"Garments are so much better, colourful and more in line with current fashions, helping people feel more at ease with daily wear."
Ms Forster hopes events planned to coincide with Lymphoedema Awareness Month in March will put a spotlight on the condition and attract more members to the support group she started last July.
"We have attracted 25 members over the past six months and are now seeking to find other men and women in the community who would like to meet with us," she said.
"Our group is a gathering of amazing people who deal with this condition, some newly diagnosed, others who have had it for over 20 years.
"Support groups play an important role in sharing the information and helping people manage their own situation by knowing what is out there and how to access services."
Liane O'Brien is a senior physiotherapist with the lymphoedema service operating at St George Hospital, which services the South Eastern Sydney Local Health District.
She said patients required lifelong care, beginning with intensive treatment as soon as possible after diagnosis to get the condition under control and teach them how to manage their symptoms.
She said lymphoedema was not only a physically debilitating condition but caused psychological problems in a high proportion of patients.
"It can cause negative self-image as well as emotional changes such as anxiety and depression," she said, adding that was why support groups were so important.
"People can meet at a safe place and discuss issues they are having and have that support from people who are going through the same thing," she said.
Meetings are held at the Watergrill Cafe in Cronulla RSL Club on the third Tuesday of every month from 10.30am to noon. The next meeting is on Tuesday, March 17. Evening gatherings are sometimes held for those who can't make the daytime meetings.
Details: Anne Forster, 9525 1987, or Cheryl Brighton, 0403 200 105.