Maureen Hutchinson has lived her life sick.
The 68-year-old’s first memory is of being blinded by illness. Alone in a cot eyes swollen shut; terrified.
“I was two, I woke up one morning and my eyes had swelled up – I couldn’t see anything,” she said. “I was in my cot and I called for my mother but she wasn’t there. That’s my earliest memory. I was distraught.”
The next 14 years were a whirlwind of ambulances, intrusive tests and near-death experiences.
But for years no one could identify why Mrs Hutchinson’s face, throat and body swelled painfully.
The teenager lived in fear that at any moment she would be unable to breathe.
“I always used to carry a spoon, a little soup spoon. I’d always have it with me,” Mrs Hutchinson revealed.
“I never told anyone for years and years but that spoon was my lifeline.
“I always thought if my throat did close and I couldn’t breathe I’d stick the spoon down my throat and turn it sideways to get an airway.
“I don’t know if it would have worked or not – but that’s what I always thought.”
Over her life, Mrs Hutchinson had three tracheotomies – inserted after neck swelling blocked her airways – and one remained in place for 23 years.
At 16, after many exploratory surgeries, misdiagnoses and an unnecessarily removed appendix, she was finally diagnosed with Hereditary Angioedema or HAE.
The life-threatening condition is caused by a mutation in the gene that controls a blood protein C1-Inhibitor.
HAE Australasia believes 1 in 50,000 to 1 in 150,000 people have the condition, but many remain undiagnosed with doctors struggling to recognise it.
Four generations of Mrs Hutchinson’s family lived with HAE, but she was the first diagnosed.
I looked like a monster. I didn’t want people to see me like that.Maureen Hutchinson
Physically, the disease has caused Mrs Hutchinson to be bedridden or in hospital at an average of one week every month, or up to 125 days per year.
Emotionally, she suffered through self-consciousness, isolation and depression, with few understanding her condition.
When her face swelled, as it often did, Mrs Hutchinson would stay home, bedridden with pain and not wanting to be seen.
“I’ve lived my life sick,” she said.
“It has a big emotional impact not just on me but on my husband Malcolm and the whole family.”
Mrs Hutchinson said she made plans, saying “God willing”, because she knew there was always a chance HAE would take away her choice.
On the night of her 21st birthday party, her friends and family gathered waiting for a “grand entrance” she never made. Instead she spent the night in hospital.
“On my wedding day I had an attack,” she said. “I had to go to the doctor and have a morphine injection and I walked down the aisle zonked out of my mind on my dad’s arm ...
“I didn’t have children because of the chance of passing it on, and I was so sick when I was of childbearing age there’s no way known I could have carried a child.”
But HAE hasn’t stopped her living life.
“We plan trips and did overseas travel and a lot of times it turned to s--t,” she laughed.
“I wouldn’t let it stop me doing my best, so when I could, I did what I could.
“I wouldn’t have been able to do it without Mal.”
For years her illness was a closely guarded secret, but Mrs Hutchinson now wants to share her story to raise awareness of the disease, hoping to help others.
“I didn’t want people to know because it was so gross, swollen eyes, lips right out there – I looked like a monster,” she said.
“I didn’t want people to see me like that.”
Even with a permanent tracheotomy for 23 years, it was easier for Mrs Hutchinson to hide her condition than to explain the rare disease.
“She was so self-conscious about it,” Mr Hutchinson said.
“Everyone just thought [the tracheotomy] was a necklace on a chain.
“She wouldn’t even let people visit her in hospital.
“When she’s good, she’s good as gold, so people wouldn’t see her for a week and she could have been in bed the whole time or in hospital on morphine but they’d have to say to themselves, ‘she can’t be too bloody sick’ … I think that was in people’s minds.
“We found ourselves a bit isolated.”
Since starting a new treatment, Mrs Hutchinson hasn’t had an attack since May 2017, with her husband saying she's a changed woman.
Mrs Hutchinson said she believed it was hard for her husband to see her so sick but Mr Hutchinson said otherwise.
“I still like her,” he laughed.
“It hasn’t been hard, it’s hard to talk about. It’s been a pleasure, we’re pretty happy.”