NZORD connects patients with rare disease

16 January 2018

In October Julie Mitchell went to the Emergency Department of Christchurch Hospital unable to swallow with a swollen tongue, throat and glands. She had experienced a life-threatening allergic reaction to the antibiotic metronidazole which led to Stevens-Johnson syndrome (SJS), a rare and potentially fatal skin reaction marked by loss of skin and mucous linings. 

Hospital staff were unable to diagnose her condition for six days which meant a number of her symptoms were not treated appropriately. There was a lack of understanding from some staff and Julie felt isolated and disregarded.

More than two months since this experience, Julie’s body is scarred from the rash, her vision is affected and she is unable to resume her active lifestyle. There is also the threat of the re-emergence of SJS or a trigger for other auto-immune conditions.

Reading this story in the news last week prompted NZORD contact to contact Julie and offer support. NZORD’s Relationship Manager, Lisa Crawford, researched this condition and found another woman in Paihia with the same rare disease who was willing to connect and offer support.

“NZORD used our networks to connect Julie with someone who understands her experience of this debilitating rare disease,” says NZORD Chief Executive Dr Collette Bromhead. “We’ve now helped to establish a support group so that other New Zealanders with Steven-Jonson syndrome can benefit from peer support.”

NZORD has also set up a Givealittle fundraising page on behalf of Julie, to raise funds to purchase a computer and internet access for her use. She feels very isolated by her condition and a computer would allow her to connect with other international patients and support groups, plus learn about research and treatment. All funds raised for Julie will be directed towards this goal.

Help Julie's long recovery from a rare illness (Givealittle page)

Christchurch woman's battle for treatment after being struck down by rare illness (The Press)

Stevens-Johnson syndrome fact sheet

Stevens–Johnson Syndrome

Phone: 09 4026969/0211948130