North Shore Times (New Zealand)
Shore patient off to Mayo Clinic
After a long battle with a slowprogressing illness, Josie Galbraith is looking for answers.
At 12, she was diagnosed with the rare condition multifocal motor neuropathy, which causes gradual muscle weakness.
Galbraith, who lives in Birkenhead, struggles with tasks like heavy lifting, opening jars or slicing food, and a 10-minute walk leaves her seriously fatigued.
Hiking and sports are off the cards, but the 30-year-old still enjoys crafts and making Polish donuts, and recently completed her PhD in biological sciences at the University of Auckland.
‘‘This is quite a strange, unique condition that I have,’’ Galbraith says.
‘‘People are surprised when I tell them about it. I’m pretty good at hiding it.’’
Neurologists believed Galbraith’s condition would eventually plateau, but it hasn’t, and over the past few years she has also developed sensory issues.
Additionally, her body has not responded to numerous bouts of intravenous immuno globulin treatments over the years - meant to help manage symptoms and strengthen muscles.
‘‘The fact it hasn’t plateaued but is still gradually getting worse is not ideal,’’ she says.
‘‘I tend to fatigue quite quickly. I do sit down and do art and, when it gets down to crunch time, I need to take breaks. I’ve learned to know that, when my body needs to rest, I have to take it.’’
Now she’s preparing to head to the world-leading Mayo Clinic, in the United States, in September to undergo two weeks of testing with neurologists and specialists.
She is hoping the trip, recommended by her neurologist, will identify what is wrong and whether there are any courses of treatment available.
‘‘There’s a possibility we won’t get any new information but as a scientist I can know that we’ve done everything,’’ she says.
‘‘I want to go get the tests and know nobody has made a mistake or missed anything they should have picked up.’’
Her father and sister, Tessa Galbraith, will be joining her for the trip and have set up a Givealittle page to help raise money for the medical tests, which could be up to $40,000.
‘‘It’s been really difficult to stand by watching her get progressively worse and not be able to help,’’ Tessa says.
Go to givealittle.co.nz/cause/ getjo2mayo for more information and to donate to Galbraith’s trip.