$40,000 transplant needed

Kirstin Edwards at Palmerston North Hospital. Photo / Vision Media

A woman whose skin is tearing away from her body is likely to get a transplant overseas after Kiwi specialists declined to carry out the procedure.

Her situation has sparked talks about the need for a transplant centre to be set up in New Zealand.

Kirstin Edwards, 27, has lived in excruciating pain for almost six years with a rare autoimmune disease called systemic scleroderma, which causes her skin to go so tight it rips.

The Herald on Sunday told her story in February after she became frustrated while seeking autologous stem cell transplant.

The risky procedure is not available in New Zealand for sufferers of certain diseases including scleroderma.

Sydney-based haematologist Dr John Moore is likely to do the transplant in May. Kirstin's elder sister Nicole Edwards said the transplant would cost $40,000, which her family was frantically trying to raise.

"I feel like the whole world has been lifted off my shoulders and I can breathe again," Nicole said.

"It has been a long and frustrating road and I'm so happy that my sister's horrible pain will soon be just a bad dream. She deserves to live a normal life."

Kirstin's battle has prompted discussions over a need for a national transplant centre to treat autoimmune diseases.

Information obtained under the Official Information Act revealed specialists have highlighted a lack of transplant options in New Zealand.

Waikato Hospital's haematologist Dr Humphrey Pullon said: "We have no mechanisms in New Zealand for dealing with new types, or new indications, of transplants."

Palmerston North haematologist Dr Bart Baker told the Herald on Sunday the Haematology Advisory Group met last week to discuss the issue. However, it was too early to indicate whether there was enough patient demand for a national centre.

"The impetus for pushing this is coming from individual patients who have read something on the internet," Baker said.

"If the centre is to be set up, it needs be done with good support from experts in those diseases."

The Ministry of Health would be informed of the discussion, he said.

To help Kirstin get treatment, click here.