Without regular blood donors Sean Johnson would die.

The 55-year-old Rotorua man has Hereditary hemorrhagic telangiectasia (HHT), also known as Osler-Weber-Rendu disease and Osler-Weber-Rendu syndrome.

HHT is an autosomal dominant genetic disorder that leads to abnormal blood vessel formation in the skin, mucous membranes, and often in organs such as the lungs, liver, and brain.

Treatment focuses on reducing bleeding from blood vessel lesions and sometimes surgery or other targeted interventions to remove arteriovenous malformations in organs.


Chronic bleeding often required iron supplements and sometimes blood transfusions.

"My veins are a bit stuffed. The grow vigorously and they hook into other ones and push to the surface and I have an enzyme missing so they push to the surface of my skin and they crack and they bleed."

IN NEED: Sean Johnson needs extra blood to stay alive. PHOTO/BEN FRASER
IN NEED: Sean Johnson needs extra blood to stay alive. PHOTO/BEN FRASER

Mr Johnson was born with the disease and it was diagnosed when he was 5-years-old. It was not until 15 years ago that he had to start having regular transfusions and now he also has regular laser surgery to remove his excessive veins.

"I bleed, my veins crack and I bleed. I have laser surgery regularly. I'm having a transfusion on Thursday.

"When I have laser I can go three or four months without a transfusion. They laser the veins back and then they grow back and they do it again.

He would die if he didn't get the transfusion. He has had nine in the past 15 weeks and countless transfusions over the last 15-years.

"I've gone through patches where I haven't needed transfusions. I try and encourage people to give blood. It doesn't hurt. If it wasn't for the blood being given, people like me and people worse than me, wouldn't be here."

How to donate:


Visit the NZ Blood Service website for a list of donor sites and to see whether you are eligible.