Community Compass Campaign


Shari's Story

In partnership with Ipsen, the Australian Pituitary Foundation (APF) present the Community Compass Campaign, a disease awareness initiative empowering patients to navigate how they live with Acromegaly through the shared experience of other people living with the condition.

“It’s really hard to explain the years before being diagnosed – how confused you are. Just really confused with what am I doing wrong? And then when you get diagnosed and realise you’re not doing anything wrong.”

Shari, diagnosed with acromegaly.

Shari was living with acromegaly for around 8 years before she was diagnosed, which happened when she was being wheeled into emergency surgery for a pituitary tumour.

At the time, her surgeons preparing her for surgery asked a few key questions that led to her diagnosis.

“’Does your jewellery not fit you anymore? Do your rings not fit?’ and I said, ‘Yeah’. And then they said ‘What about your shoes? Have you gone up in shoe size?’. And I was like, ‘Yes, but what does any of this have to do with my brain?’. They said, ‘We think you’ve got acromegaly.’ . …They did the tests in hospital and it was confirmed that I do have what they suspected.”

The diagnosis changed Shari’s perspective and priorities in life.

“I really just valued time and quality time with my family, I really valued my health.. . . I wanted to be able to be in sunshine all the time and swim every day and be happy rather than work silly hours and just not do the things that make me happy.”

For partner Chris, there was acceptance of the ongoing learning curve ahead of them both.

“I think little things help a lot, like attending medical appointments together and trying to be there every step of the way so she knows that she’s not doing this alone.”

Together, they look for the positive in the challenging experiences. For Shari, the diagnosis has led to a focus on healthy living.

Looking for more support and resources?

Acromegaly Fact Sheet

Acromegaly occurs when your pituitary gland makes too much growth hormone, due to a pituitary tumour.

Acromegaly Support Groups

Every February and August, the APF hold online support groups via zoom. Click the button below to register your interest for the next Acromegaly Support Group.