Walk raises awareness of unique autoimmune disorder, Guillain-Barre

Walking 2km may sound like an easy task, but for Stallone Edmonds-Tepania it's a significant milestone in a long road to recovery.

Edmonds-Tepania has Guillain-Barre syndrome (GBS), an autoimmune disorder, which causes the body's immune system to attack its own tissue.

She was diagnosed on November 23 and told she wouldn't walk for another six to 12 months.

But today alongside more than 100 friends, family members, strangers and supporters, including two other GBS sufferers, she walked 2km.

It was slow moving at times, taking a little over an hour but she was determined to walk the full distance and the achievement was "huge".

Stallone Edmonds-Tepania leads the pack with former sufferer Ivan MacGregor, right. Photo / Ben Fraser

"The most I've done in one time is maybe 500m. On the walk people kept telling me to sit down and rest but I thought if I sat down and you pushed me that would defeat the whole purpose of today."

While the event was called Walk2k4Stallone, she insisted it was about all GBS sufferers.

"I want to bring awareness to the disease, not to me."

That's why Jackson Lee and Ivan MacGregor also attended.

Lee has been in hospital battling GBS since July and got a special release to attend the walk.

He said he joined in his wheelchair because he knew exactly what Edmonds-Tepania was going through and wanted to raise awareness about the condition.

Jackson Lee got special release for the hospital to attend the walk. Photo / Ben Fraser

Lee is determined to walk out of the hospital by his birthday on March 24 and says he's right on track to do so.

Ivan MacGregor, 17, has fully recovered from the condition which he had about three years ago.

Just over 100 people participated in the walk to raise awareness. Photo / Ben Fraser

He was in the hospital for two weeks and it took about 18 months to get back to being comfortable running and walking again.

"Every case is different, mine is too, but you have to stay positive.

"I was playing in a hockey competition before I got sick and I wanted to get back to that point so I kept pushing. That was the drive for me.

"Making a goal is a big thing."

For Edmonds-Tepania the goal of walking 2km has been ticked off, but the members at Edmonds Boxfit Gym, which she is the owner and co-founder of, have already set her a new one - to do a full 42km marathon.

"I feel like that's impossible but this wasn't meant to be possible either. I was told it would be six to 12 months until I walked again."

Rotorua mayor Steve Chadwick also attended as the patron of New Zealand's Guillain-Barre society.

Chadwick's sister suffered from the condition 15 years ago and spent three years in the intensive care unit.

Chadwick said the walk was a great conversation starter and had inspired people in multiple ways.

"It's emotional, it takes me back to our own journey as a family."

Roughly 100 people in New Zealand per year are diagnosed with the condition and Chadwick said many doctors had never seen a case of it.

WHAT IS GUILLIAN-BARRE SYNDROME?

• Pronounced ghee-yan bah-ray, it's a rare autoimmune disorder where the body's immune system attacks part of the peripheral nervous system.
• Cause unknown but onset follows viral, bacterial or parasitic infection.
• Both genders affected, men more commonly than women.
• First symptoms usually tingling or numbness followed by progressive, extreme muscle weakness, muscle and joint pain, eye muscle paralysis, difficulty breathing.
• Hospital treatment imperative.
• Recovery period variable.
• About 5 per cent cases fatal.
- Sources various