Nephrotic Syndrome: Jonah Lomu’s Rare Condition Explained

The historic moment, which came in a four-try performance for the All Blacks in the World Cup semi-final little more than 20 years ago, immediately catapulted the towering winger to global superstardom.

Lomu would go on to play 63 Tests for New Zealand, the majority of which while suffering from the rare kidney disease. Lomu died suddenly and unexpectedly on Wednesday morning, New Zealand Rugby chief executive Steve Tew confirmed. He was 40.

The rugby legend underwent his first kidney transplant on July 28, 2004, the year after he played his final game for the All Blacks.

The organ, donated by Wellington radio presenter Grant Kereama, served Lomu for seven and a half years. He made a surprise return to the game, playing in New Zealand’s first division and in Wales. Lomu competed in body building competitions and, in 2006, was even linked to a stint in the NRL with the Gold Coast Titans.

But in 2011, Lomu’s body rejected the replacement kidney and the disease took over once again.

He had been “a prisoner of dialysis ever since”, according to the Mail on Sunday’s Oliver Holt, who spoke with Lomu in August.

Lomu would spend six hours at a time hooked up to dialysis machines, which cleansed his blood.

“You have to try and stay up and be happy and positive about it,” Lomu told the Mail at the time. “Because I will tell you one thing: it does get you down at times. It’s difficult. Every dialysis patient is different but we have one commonality: we have no other choice. Your second choice isn’t really a choice. It’s just you giving up.”

Lomu, sadly, said his goal was to see his children, aged six and five, become men.

“My goal is to make it to the boys’ 21sts,’ Lomu said, describing his sons as “miracles”.

“There are no guarantees that will happen, but it’s my focus. It’s a milestone that every parent wants to get to.

“My dad died young and that makes you think. I want my boys to be healthy and if they get to 21, they should be fit and healthy and live a normal life.”

Lomu had only recently returned from a lengthy trip in the UK, where he was conducting promotional duties for the World Cup.

“By the end of it I’ll have learnt the ins and outs of every clinic in the country,” he joked to the London Telegraph before embarking on the trip.

WHAT IS NEPHROTIC SYNDROME?

In the simplest of terms, it can be described as a loss of protein through damaged kidneys that leads to low protein levels in the blood.

When protein levels in blood drops, fluid seeps out of the smallest blood vessels and settles in surrounding tissue, which causes swelling in various parts of the body.

Generally, protein is not removed when kidneys filter waste from the blood, but in the case of nephrotic syndrome, protein leaks through the kidney and is removed from the body through urine. A person with the disease can lose more than 25 times as much protein as the normal amount during a 24-hour period.

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