NAB News

NAB Technology intern Megan Dudley-Bateman admits that her metabolic disorder galactosemia sounds like something from outer space.

“It’s like I’m a Galaxy Girl,” she said.

Galactosemia is a rare condition that affects the body’s ability to convert galactose to glucose. For infants not treated promptly with a low-galactose diet, life-threatening complications can appear only days after birth.

In Megan’s case, she was lucky to make it through her first night.

“At the time of my birth in 1990, there was a lot of uncertainty about what was wrong with me,” she said. “My file at the Royal Children’s was almost large enough to accommodate all of the back-catalogue of Encyclopedia Britannica!”

Symptoms of galactosemia can include jaundice and feeding difficulty for infants, and thereafter a lack of energy, liver damage, delayed development and early loss of ovary function.

Living with galactosemia

For Megan, managing the condition has required medication, a strict diet, and a lot of poking and prodding by doctors throughout her childhood.

“I was a fairly sick child who couldn’t fully comprehend why I wasn’t able to share in the fun of birthday cakes and other party treats throughout primary school,” she said in her article ‘The past does not define your future’.

“These days, doing things like going on the train into the city can be a big hurdle, or coming into work and staying here for eight hours a day.”

As recently as 2016, Megan also had corrective eye surgery to address low vision associated with galactosemia.

“Before surgery, I thought everything was flat and that’s how the world looked to everyone,” she said. “When I had my eye done and I could actually see the quality and dimensions of everything.

“It was such a life-changing thing and after the surgery I got these cool dark glasses like a 3D-cinema rock star!”

Invisible disability

It wasn’t until her twenties that Megan was also diagnosed with autism spectrum disorder, which was at first “passed off as just another trait of galactosemia”.

“The reason that was diagnosed so much later in life was also because I tend to ‘mask’ a lot,” said Megan. “I try to blend in with other women my age and act as they would.”

What galactosemia and neurodiversity have in common is that they’re both invisible disabilities.

“It’s hard when it’s not something that’s outwardly visible for people to realise what’s going on,” said Megan. “And it’s also a challenge because I have to be comfortable enough and trust people around me enough to share it to them.”

Although life has thrown many challenges her way, Megan is adamant that galactosemia “has never shaken or rattled my determination to succeed and be happy with my life.”

“After all, this 1 in 60,000 condition has just made me 60,000 times more hungry and driven!”