For nearly eight years Hannah Cadwallader was told her serious illness was in her head.

Now, the 28-year-old is getting surgery to remove a potentially deadly tumour in her brain.

The Papamoa single mum wants to share her story to raise awareness about the rare disease which could have eventually killed her had it not been picked up. She hopes to prevent others from experiencing the years of suffering that she did.

"If just one person can benefit from my suffering it will make this fight all the more worth it.

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"I could have died but this one doctor listened and has saved my life," Cadwallader told the Herald while holding back tears.

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The young mum is about one in a million people to have Cushing disease - a condition where the pituitary gland releases too much of adrenocorticotropic hormone (ACTH), also known as the stress hormone.

Patients with the disorder can develop high blood pressure, weight gain, bone and muscle loss, acne, severe fatigue, cognitive difficulties, headaches, depression, anxiety and
irritability.

For Cadwallader it was all of the above.

"At one point, for eight months I went to bed every night thinking I'd be dead in the morning.

"I was going to the doctor every three days, I couldn't walk properly. . . it felt like I was on a cruise ship most of the time. My vision was going, I sometimes slur my speech, it's been horrible."

Cadwallader said she slipped under the radar for years and was treated under the mental health umbrella.

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"Numerous times I was prescribed anti-psychotic medications and told to 'deal with my anxiety' and that I was a 'hypochondriac'."

That was until Dr Glen Davies saw her one day in hospital when he was on-call.

"He just looked at me and told me to stand sideways and he looked at my profile, and he said because my limbs were so skinny and my stomach was so big and my face is the shape it is it could be Cushing disease.

"Within two minutes he had all the blood tests I needed to do. In the next couple of weeks I was admitted into Waikato Hospital where I had a MRI and they found a big tumour."

Cadwallader said she has been bumped up the list and is scheduled for surgery to remove the tumour in March.

Hannah Cadwallader has been diagnosed with Cushing disease after seven years of being told her illness is in her head. Photo / Alan Gibson
Hannah Cadwallader has been diagnosed with Cushing disease after seven years of being told her illness is in her head. Photo / Alan Gibson

Davies told the Herald he'd received extra training for integrated and lifestyle medicine which taught him to always ask why.

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"I think one of the problems with pharmaceutical medicine is that we make a diagnosis and then the only 'why' we ask is which is the right medicine to treat this condition.

"One of things I always try to do is when something is unusual, like a young person with high blood pressure, I ask why and I think it's just asking that question that prompts you to think there has to be more to this and that's all I did with Hannah."

Davies said before Cadwallader he'd treated people with Cushing disease before but never made the initial diagnosis.

"She spoke about fatigue, difficulty loosing weight and muscle strength, trouble with word finding and I just joined the dots."

Rare Disorders NZ's chief executive, Lisa Foster, said it was important for people to understand the varied symptoms that can be complex.

"Clinicians need to be aware and not jump to the conclusion that the patient is making it up. Rare diseases often are easy to dismiss for this reason."

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A Givealittle page has been set up to help Cadwallader pay for her medical costs.

About Cushing disease:

• It's a condition in which the pituitary gland releases too much adrenocorticotropic hormone (ACTH), also known as the stress hormone.

• Cushing disease is caused by a tumour or excess growth of the pituitary gland.

• Roughly one in a million New Zealanders have the disease.

• Common signs include: weight gain around the abdomen, upper back, face and between the shoulders, severe fatigue, muscle weakness, high blood pressure, cognitive difficulties and bone loss.