A Christchurch teenager says he still feels “normal”, despite being diagnosed with a rare and deadly auto-immune disease that nearly sent him into cardiac arrest.
In September Mitchell Pasco,18, reluctantly agreed to see a doctor about strange bruises, chest pains and shortness of breath.
Within hours he was in hospital, fighting for his life.
Doctors told his bewildered family his heart was failing and he was at risk of cardiac arrest.
It took a team of more than 20 doctors four days to diagnose Pasco with Takayasu arteritis, which most commonly occurs in Asians and women.
He is one of only four New Zealanders to have the disease, which causes chronic inflammation of the large blood vessels, including arteries going to the brain, limbs, heart, lungs and kidneys.
Globally, up to three cases per one million people are diagnosed annually.
The three-week hospital stay was extremely difficult, Pasco said.
“I hated hospital. I felt like I was in jail because I couldn’t leave the ward.”
Side effects from medication, which included fortnightly chemotherapy and steroids, caused a raft of unpleasant side effects such as nausea, fatigue and rashes.
“I got really angry at all the doctors and nurses because prior to going into the hospital I felt fine; I was working, I was doing everything normal and then they got me on these meds and, it’s not their fault, but the meds knocked me around a lot.”
Just weeks before Pasco had been on track to achieve his goal of owning a home in Whangerei by the age of 24. He was working two jobs, seven days a week.
Signs of trouble started about a year earlier with night sweats, episodes of hand numbness and lightheadedness, but the teen did not take them too seriously.
Even when large bruises appeared on his legs and arms Pasco dismissed them.
“It was like, ‘I’ll get over it, it will go away eventually’.”
In December last year his mother visited from Gisborne and joined his sister in insisting he see a doctor.
A specialist ruled out leukemia and suggested he may have vasculitis, a condition that destroys blood vessels.
Steroids were prescribed for three weeks, but made no difference to the bruising.
Pasco returned to work and continued to ignore the crimson and purple blotches that were spreading around his body.
By September the bruises were becoming itchy and painful, he had started getting chest pains and at times struggled for breath.
“We were joking about it when he was having those heart moments before he went into hospital, when he was saying ‘I think I’m having a heart attack’,” Pasco’s sister Ashley Van De Loo said.
Pasco and his family thought the episodes were panic attacks caused by a lack of sleep and overworking.
But after glimpsing his bright red bruises she insisted he visit an after-hours doctors’ surgery.
A triage nurse found his resting heart rate was 141 beats per minute and asked if he was OK.
“I said ‘I feel fine’ and she said ‘I don’t think you’re fine’.”
He was told he needed to go to hospital and reluctantly drove himself.
“I thought I’d be there for five minutes.”
New Zealand Organisation for Rare Disorders (NZORD) chief executive Dr Collette Bromhead said a vasculitis support group was set up to help people with 12 disorders, including Takayasu arteritis.
Depression and anxiety were common among patients coming to terms with a rare disease diagnosis and prescribed high doses of steroids.
“This is why these support groups strongly recognise the emotional component to the disease as being as important as the physical treatment.”
She said Canterbury District Health Board staff should be congratulated achieving the diagnosis as the non-specific symptoms could make it difficult.
“The good news is [Takayasu arteritis] has a 95 per cent survival rate if caught and treated early.”
Back at home with Van De Loo and her young family, Pasco struggles with his new life on a sickness benefit.
“To be honest I haven’t really taken it in. I feel like I’m fine. I don’t think it’s that serious still right now.”
Van De Loo set up a fundraising webpage to help with Pasco’s medical expenses while battling the illness.