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Rare Humans – Anna

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Like her grandmother, father, brother and son, Anna has autosomal dominant polycystic kidney disease (ADPKD). “Knowing that you are likely to end up with kidney failure…is like having a ticking time bomb,” she says.

The threat has done little to slow down the pace of her international career or life with her three children. A senior human resources manager with a leading management consultancy, Anna, now in her early 40s, has an overseas role as well as leading the company’s human resources services in Australia.

The family’s history suggests that Anna, too, may eventually need dialysis or transplantation. “I try not to be overwhelmed by that, because you could let it become all-consuming,” she says. “Sometimes when I look at the future I pull back and realise that there’s so much more in life. This is just one element that I have to live with.”

PKD in the family

As a child Anna visited her grandmother who was having dialysis at home. She became one of Australia’s longeststanding dialysis patients, being treated for more than 20 years. For a child, exposure to an unwell older relative was disturbing. “The machine was like another person in the house,” she says. “It was confronting to learn that her blood would leave her body, get cleaned and get put back in again.”

Anna’s father provided a very different role model. “My father was diagnosed with PKD in his mid-20s,” she says. “He discovered he had the disease but was determined not to become ‘a sick man’. Dad’s been a very positive influence. Like him, I don’t define myself as a sick person or think that PKD should hold me back in any way.”

Anna’s father ignored the fact that he had PKD – he had no symptoms – until his kidneys failed with little warning 20 years after the diagnosis. After about 6 months on dialysis he had a kidney transplant from his brother. “Now inhis late 60s he is well, goes to the gym every day, and lives like someone decades younger,” she says.

When Anna was 16 she and her older brother had an ultrasound to check whether they, too, had PKD.“At that point we didn’t know very much, but we had two extreme examples in the family – my grandmother having dialysis and my dad who said there was nothing wrong with him.

“In hindsight, 16 is not a great age to find out something like this but, to be honest, I didn’t think much of it. My mother was very distressed so I knew it was something bad, but in my head I thought, ‘I’m going to be just like my dad’. I was invincible, like all teenagers, and I didn’t really change very much.”

Anna’s younger brother was also diagnosed with PKD, and noticed the first symptoms such as kidney pain and blood in the urine in his early teens. Most recently the family has discovered that Anna’s oldest son has PKD too, after suffering a series of kidney infections at the age of 15. “I was with him when he had the ultrasound,” she says.

“I saw the cysts on his kidneys, and I knew what it meant. He said, ‘It’s fine mum!’, but I did have a heavy feeling of guilt. It’s one thing to have a theoretical discussion when you’re pregnant about the risks for your children, but very different to find out your 15-year-old has the disease.

“He knows about PKD. He has seen me in and out of the hospital and thinks it’s no big deal because he also sees me when I’m very healthy.”

Click here to continue reading Anna’s story. By registering for our newsletter you will automatically receive the Rare Humans Magazine which shares the rest of Anna’s story plus another 9 more.

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