Living with rare disorder

MORGAN Miller can only indulge in a normal portion of meat three times a year – at Easter, Christmas and her birthday.
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Miss Miller, 25, of Launceston, is one of a rare group of Australians diagnosed with a genetic metabolic disorder called phenylketonuria, or PKU as it is commonly known.

About one in 15,000 people are diagnosed with the condition, with those affected not able to process foods properly as their liver cells cannot convert phenylalanine to tyrosine.

Miss Miller was diagnosed at birth, after developing a rash and having the heel prick test.

Her brother also has the rare disorder, which is said to be inherited when both parents carry the PKU gene.

The only way PKU can be treated is through diet and supplements. There is no cure.

If left untreated, phenylalanine builds up in the bloodstream, making it toxic, which can lead to brain damage and mental retardation.

Miss Miller said the average person with PKU is only supposed to eat four to 10 grams of protein a day.

‘‘And even then it has to be spread across the whole day, not just in one meal,’’ the Pycsam Health and Fitness Club creche manager said.

Miss Miller said things like eggs, meat, fish, dairy, lentils, nuts, pasta, soy and chocolate were out of her diet.

‘‘On a typical day, I have beans and butter,’’ she said.

‘‘I also have mushrooms, tomato, low-carb vegetables and fruits.’’

Miss Miller uses expensive meal replacers – a 400 gram tub of milk replacer costs $15.75 – and supplements to even out her diet.

She usually has four or five supplement pouches a day, which she says ‘‘taste a little bit like dirt, but you get used to it’’, to help sustain her active lifestyle.

‘‘If I wasn’t to have the supplements, I would be hungry all the time,’’ Miss Miller said.

She said she could have meat occasionally, but only in small doses.

‘‘There’s three days a year my dietitian has said I can have free range of anything, as long as I have followed the diet the rest of the year,’’ she said.

‘‘That’s Christmas, Easter and my birthday … I love having lamb cutlets.’’

Miss Miller said the diet was difficult when she was young.

‘‘When mum used to take me to parties, mum would eat the sausage roll and I would have the pastry, even though I wasn’t supposed to, so I wasn’t missing out,’’ she said.

She gave up the diet when she was 14, as she didn’t fully understand the consequences and wanted to live a normal life.

‘‘I ate a normal diet for about eight years,’’ Miss Miller said.

‘‘I put on a lot of weight, my mum and I fought all the time, I was angry, would snap at the stupidest things, I didn’t sleep well, couldn’t concentrate, was tired most of the time and was highly emotional.’’

She has been back on the diet since she was 23 and will remain on it for the rest of her life.

Miss Miller travels to Melbourne each year to see her specialist dietitian, to ensure everything is going OK and to meet others with PKU.

‘‘I saw someone in Melbourne when I was first getting back on the diet. She was in her mid-60s, was nonverbal and very mentally slow,’’ she said.

Miss Miller said it scared her seeing what could happen if you didn’t stick to the right diet, but she knew she was on the right track.

Miss Miller wants more people to be aware of food disorders and allergies.

‘‘People don’t know the consequences that someone with an allergy can have,’’ she said.

‘‘If I was to eat it, there is no initial effect but someone with anaphylaxis to peanuts or eggs, could have a seizure on the spot and people don’t really know those effects.’’

Morgan Miller

This story Administrator ready to work first appeared on Nanjing Night Net.