Cathy Tia, from Ōtaki, has battled a trifecta of chronic illnesses over the years.
The 46-year-old has been through the darkest of times but her positive mindset, zest for life, faith and family have kept her resilience strong.
“I have never considered myself a victim and feel extremely blessed I can continue to work, be an active parent and citizen,” she said, as Rare Disease Day, which happens on the last day of February, fast approaches.
Cathy’s illness journey started in her early 20s when she was single, lived in Wellington, worked as a personal trainer, and studied part-time at teacher’s training college.
She started to get symptoms ranging from chronic tiredness, migraines, anxiety, low mood, joint aches, adult acne, hair loss and weight gain.
Her doctor did some hormone tests which showed her cortisol was off the charts, which led to further tests, where an endocrinologist discovered she had the rare Cushing’s disease which affects only 10 to 15 people per million a year.
The disease meant she had a non-cancerous but invasive and fast-growing brain tumour in her pituitary gland (pea-sized gland in base of brain which is in charge of making several essential hormones).
She underwent various tests and monitoring for a few years, because of the rareness, before surgery to remove the tumour in 2000.
Specialists felt they had removed all of the tumour and hadn’t disturbed her pituitary gland.
She was delighted, went back to work part-time, and soon met her future Samoan husband Peter Tia in the Porirua library.
“He’s the most incredible stoic person I’ve ever met in my life.”
So we live our lives with hope, with faith, and we have our beautiful kids to keep us busy.
Within six months they were engaged, after 18 months were married, but soon after their wedding in 2002 Cathy’s symptoms returned.
Tests proved Cushing’s disease had returned and featured a bigger benign tumour as well as scattered cells.
There was the possibility the whole pituitary gland might need to be removed and she wouldn’t be able to have children.
Most of the tumour was removed, the pituitary gland left intact, but there was a small chance she wouldn’t be a mother.
It was a torrid time with Cathy on lots of medication for depression and anxiety.
The only option to get rid of Cushing’s disease once and for all, and because the scattered cells couldn’t be taken out, was to remove both adrenal glands (which produce hormones to regulate the body) which sit on top of the kidneys and are in sync with the pituitary gland.
The glands were removed leading to secondary Addison’s disease, which only one in 100,000 people get, requiring medication every five hours to stay alive.
About two years later they thought about having a second child and, during the week they had booked in to start the IVF process again, something amazing happened.
“Grace came to us, with hands on hips, and said ‘Mummy there’s a baby boy in your tummy’.”
A scan at the end of the IVF consultation showed a small sac which weeks later showed a heartbeat that stunned specialists.
Cathy had a normal pregnancy which went smoothly and led to the arrival of their son Elijah via C-section too.
“So I had a 3-year-old and a newborn,” she said noting they wouldn’t have had children if Cushing’s was genetic.
Life carried on but some time later, during a general check-up, tests showed one of her blood counts had risen.
Her skin started to go dark which was very unusual considering she’s a European Pākehā.
She had Nelson’s syndrome, a rare side effect of removing adrenal glands to cure Cushing’s disease and not helped by the scattered cells non-removal.
“It’s the worst-case scenario but exceedingly rare.”
Cathy has an inoperable benign tumour and has to deal with symptoms including chronic sharp pain, weight loss, highly pigmented skin, nausea, and low blood pressure.
“I work fulltime [helping at-risk youth] and I’m an involved parent as much as I can be.
“I think I almost over-compensate because I don’t know what will happen.”
She gets an MRI annually and is thankful the tumour has stayed the same for the last three years.
“Whether that’s luck, our prayers, we don’t know, but we’re very grateful.
“So we live our lives with hope, with faith, and we have our beautiful kids to keep us busy.
“I feel everything up to now in my life has been stepping stones to share with others to find their joy again, live their best life and reach the top of their potential in whatever they desire.”
