Lymphedema and Lipoedema are progressive chronic disorders that affect the way the lymphatic system functions, resulting in painful swelling that can lead to other serious conditions. 

"I have primary Lymphedema in my right leg, and have had since my thirties," Ms Scane said. 

Diagnosed in 2001, Ms Scane is now on the 'What The Swell' committee which is a group of health professionals and those with knowledge of the condition who help raise awareness and create a support network for those suffering with the conditions. 

What The Swell gathered professionals in the field together for an Awareness Day March 4, helping families, friends and those with the conditions learn more about them and meet others who share their experiences. 

Ms Scane said her diagnosis changed her life forever.

"It meant a lot of changes in how I did things, you do what you can still but your limb is so heavy which makes it difficult to do certain things," she said.

"Things like travelling are an issue because you have to stop more and do exercises, and it's painful, then there's skin conditions to watch out for, cellulitis, and having to wear compression garments all the time."

Summer is the most difficult time of year for Ms Scane and others with Lymphoedema and Lipoedema. 

"Everyone dealing with this suffers in summer, the compression garments are thick and tight and it really isn't pleasant," she said.

Ms Scane said raising awareness is the best way to make a difference.

"We're trying to get the message out that it is hard, and it is expensive living with the condition, and people misjudge you for being obese, including doctors," she said.

"It took years for me to get properly diagnosed.

"I was pregnant so they put the swelling down to that but then I had a miscarriage and the swelling stayed, so they looked into it further."

Raising awareness will increase the potential of earlier, more accurate diagnosis, which is Ms Scane said is vital as they are all still learning. 

"Being on the committee has opened my eyes to so many things and we have gotten so far but there’s still more to go," she said.

"Since our last awareness day we’ve already had new therapists come into the system, and there’s far more facilities available for things like compression garments - you used to have to go to Adelaide just to get some."

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