New lease on life following surgery on rare brain condition

Photo: Gerhard Infante and his wife Leah thank Mater specialist Dr Alex Lehn. (ABC News: Leonie Mellor)

Photo: Gerhard Infante and his wife Leah thank Mater specialist Dr Alex Lehn. (ABC News: Leonie Mellor)


A Filipino man suffering from a rare neurological condition can now walk and talk again thanks to life-altering surgery by doctors at a Brisbane hospital.

Gerhard Infante has what is known as Lubag Syndrome — or X-linked dystonia-parkinsonism — which dates back 2,000 years to an island in the Philippines.

The condition causes his muscles to contort, and his tongue to protrude.

It has already killed two of his four brothers.

Three months ago Mr Infante and his wife were flown to Brisbane where doctors at the Mater Private Hospital agreed to perform the surgery needed to help alleviate the pain and dystonia and give a much better quality of life.

Prior to the operation he had stiff, uncontrolled, rigid movements, could barely walk, and was in excruciating pain.

Today the 49-year-old said he was no longer in pain, and could get around with the aid of a walker and hoped to do it on his own soon.

“I’m very happy,” he said.

“I can sit … tall, I can stand tall, I can sit well, and I can speak more clearly.

“I feel better, better, and better.”

Mr Infante said he was looking forward to returning to work one day and to travelling.

Primary neurosurgeon Dr Sarah Olson said it was rewarding to see Mr Infante’s progress.

“When I first met him he didn’t talk to me at all and now we’re having quite a conversation,” she said.

“He’s not having any of the pulling of his neck, he’s not in pain and he’s able to walk, which he wasn’t able to when I met him.

“Needless to say, without the surgery he would be at death’s door, if not now then very soon.

“I would hope that we’ve given him at least another ten years of good quality life.”

It is only the second time doctors in Australia have seen such a condition.

Lubag is found almost entirely among men from the Philippines island of Panay.

Photo: Dr Olson and Dr Lehn speak to Mr Infante and his wife in April, before the surgery. (ABC News: Leonie Mellor)

‘Without this surgery we don’t know what life would be for us’

Mr Infante’s wife, Leah, said the surgery and the past three months had been “a life-changing journey”.

“It means a lot. It gives us a lot of hope,” she said.

“He’s back to being romantic, and he really tries to be a little bit more independent. And I think soon he will be cooking again.

“We are very grateful. We couldn’t imagine if we didn’t have this surgery we don’t know what life would be for us.”

Ms Infante said since the surgery they had been able to travel locally, to places like the Sunshine and Gold coasts.

“Just getting a ride in the car — before it was kind of daunting, it’s really hard to stay long in the car. But during our trips, no complaints whatsoever,” she said.

“I’m so happy. And we’re looking forward to more progress.

“He’s really tries to be a little bit more independent … even things like brushing his teeth and shaving. I think soon he’ll be cooking again.”

The Infantes are returning to the Philippines today.

“There will be a great welcome there,” Ms Infante said.