Dr Keir recently bought a house at Soldiers Point in Port Stephens, so she could spend summers on the coast where it's cooler.

The heat of Maitland - where she has lived for 24 years - was making her lymphoedema worse.

Dr Keir contracted the condition as a side effect of breast cancer treatment.

The painful and chronic condition involves swelling in the body caused by lymph node surgery or radiation.

Managing the condition - which causes excess fluid to build up in tissue - requires the use of compression garments.

"I have to wear them 24-7," said Dr Keir, who holds a PhD in education.

Dr Keir shared her story to mark World Lymphoedema Awareness Day on Wednesday.

About 100 landmarks will be lit blue across the country during a week of awareness activities, including Newcastle City Hall clock tower on Thursday.

Lymphoedema Association Australia is asking for donations to help fund a support line for people living with the condition.

The association's vice president, Debbie Geyer, said "doctors receive very little training on lymphoedema".

"They are often unable to recognise and diagnose the condition," Dr Geyer said.

She said lymphoedema should be recognised and funded "in the same way as other chronic conditions such as diabetes".

Dr Keir knew a lot about the condition because she was a lymphoedema therapist.

"God had his little sense of humour there," she said.

When she had breast surgery, she asked that only one lymph node be removed.

She knew removal of more nodes would increase the risk of lymphoedema.

"But I had radiation therapy as well and developed lymphoedema from that."

The cancer returned four years later, requiring removal of more nodes from her armpit, further radiation and chemotherapy.

"I had to beg the radiotherapist to give me the radiation because he was worried it would make my lymphoedema worse," she said.

"But I knew it would keep me alive. My lymphoedema got worse, but it is manageable.

"It takes a lot of daily care. It's not an easy side effect to live with, but it's better than being dead."

The condition affects her right arm, chest, neck, face and head.

She also had her womb and ovaries removed, as she had the BRCA 2 gene - which increases the risk of breast and ovarian cancer.

Following those surgeries, she developed lymphoedema in her leg and stomach as well.

About 20 per cent of patients treated for breast, melanoma, gynaecological or prostate cancers will develop lymphoedema, according to the Cancer Council.

It's estimated that about 70,000 people in Australia have lymphoedema. It can also be caused by other conditions related to veins, scars and infections.

Dr Keir co-founded the Hunter/Maitland Lymphoedema Support Group with the late Sue Harley. It holds monthly meetings. Dr Keir gives talks on managing the condition, which can affect mental health - along with the physical symptoms of pain and discomfort.