Gerhard has what is known as Lubag Syndrome—or X-linked dystonia-parkinsonism—only physically seen in males on the island of Panay in the Philippines.
Lubag, a genetically-inherited condition which causes the sufferer’s muscles to contort, has already killed two of Gerhard’s four brothers.
Mater Centre for Neurosciences and associated teams donated their time and skills to help extend and improve Gerhard’s life.
Mater neurosurgeons Dr Sarah Olson and Dr Bruce Hall, with Neurologist Dr Alex Lehn, were able to perform Deep Brain Stimulation on Gerhard to help alleviate the pain of his debilitating condition and greatly improve his quality of life, after successfully treating his uncle Von a number of years ago.
Before the operation, Gerhard had stiff, uncontrolled, rigid movements, could barely walk, and was in excruciating pain.
“It’s very, very painful. If you rate it from one to 10 and 10 is the highest, I think 10,” Gerhard said.
Now, he is pain-free and can get around with the aid of a walker, although he hopes to be able to walk unaided soon.
“I’m very happy,” Gerhard said.
“I can sit … tall, I can stand tall, I can sit well, and I can speak more clearly. I am feeling better, better, and better.”
Gerhard’s wife, Leah, said the surgery had been “a life-changing journey” for the family.
“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.
“We are very grateful. We couldn’t imagine what life would be like for us if we didn’t have this surgery.”
Mater neurosurgeon Dr Sarah Olson said it was rewarding to see Gerhard’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.
Neurosurgeon Dr Alex Lehn said although Lubag isn’t a curable disease, the operation had given Gerhard more time with his family.
“I hope we have given Gerhard at least another ten years of good quality of life. This is a degenerative disease that we can’t cure but we can treat the symptoms very well.
“It’s a delight to help patients like Gerhard, and from a scientific view it is also fascinating to learn more about diseases we don’t otherwise see in Australia.”
Dr Alex Lehn and Dr Sarah Olson said they are proud to share their services in the Mercy tradition to help those who are less fortunate.
“It depends what the driver is from your work that satisfies you―and for both of us it’s not the money, it’s making a difference for people,” said Dr Lehn.
“Initially I thought I would have to say ‘I’m sorry we can’t help you, you’re not an Australian citizen’. It was heartbreaking. We took the case to Mater Private Hospital Brisbane who have kindly donated their time and services.”
Dr Sarah Olson would dearly love Gerhard to have the same outcome as his uncle who they operated on five years ago.
“He’s a young man with a young wife. Two of his brothers have died from this, with another brother also affected. We’d love to give all of their family hope again,” said Dr Olson.
Dr Lehn said he could not be more grateful to the entire Mater team.
“For me this is Mater at its best. Everyone working together was just incredible; organising flights, surgery, anaesthetics, blood tests, ICU, nursing, speech pathology, OT, physiotherapy, radiology, rehab … they all gave their time and services without questions and without cost.”
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