Support groups vital for rare disorder patients

15 October 2017

Mitchell Pasco has been diagnosed with Takayatsu arteritis, 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.

Mitchell first noticed symptoms last year including night sweats, unusual bruising and lightheadedness. He was hospitalised and it took a team of more than 20 doctors four days to diagnose his rare condition.

There is a vasculitis support group in New Zealand to help people with 12 disorders, including Takayatsu arteritis.

NZORD Chief Executive Dr Collette Bromhead says that depression and anxiety are common among patients prescribed high doses of steroids, in addition to the difficulties of coming to terms with a rare disease diagnosis.

"This is why rare disorder support groups strongly recognise that emotional support is as important as the physical treatment."

Christchurch teenager’s heart attacked by rare disease (The Press)

Vasculitis Support New Zealand