Haemochromotosis Awareness volunteer Sheila Stevenson uses disease to inform

SAVING LIVES: Sheila Stevenson has had haemochromotosis all her life, but was only diagnosed seven years ago. During Haemochromotosis Awareness Week, she hopes help others stop suffering. Picture: Paul Scambler.
SAVING LIVES: Sheila Stevenson has had haemochromotosis all her life, but was only diagnosed seven years ago. During Haemochromotosis Awareness Week, she hopes help others stop suffering. Picture: Paul Scambler.

“If you have to have a blood disorder, this is the one to have … but if it’s not diagnosed in time, it’s a killer.”

That’s according to Sheila Stevenson, who’s had haemochromotosis since birth, but was only diagnosed seven years ago.

“Haemochromotosis is iron overload in the body. Lots of people have less iron, but we have too much. So, what happens is the iron doesn’t go out of our body fully like it does normally,” she said.

“The excess iron gets absorbed into our bodies and goes in to our organs. Our bodies accumulate the iron over the years.”

Mrs Stevenson said it normally takes about 20 years to detect.

“Men usually get detected in their 30s, but because women menstruate, a lot of females don’t get diagnosed until after menopause and that’s what happened to me,” she said. 

This week is Haemochromotosis Awareness Week and, as a volunteer advocate, Mrs Stevenson is trying to make people aware of the genetic disorder. 

“One in 80 people are carriers, and one in 200 people have it in Australia,” she said.

Mrs Stevenson said doctors and everyday people were becoming more aware of the disease.

“It’s hard to diagnose because the symptoms are very similar to those who don’t get enough iron. My daughter is a carrier, but she is also very anemic,” she said. “My husband doesn’t have the gene, so both our children are carriers.”

Mrs Stevenson said if she had been diagnosed earlier she wouldn’t have suffered as much fatigue and walking struggles because of the aching feet and legs. 

“I was lucky enough that my iron levels weren’t over 1000, they were 700, which was still enough to affect my whole body. But when they get over 1000, that is when it starts affecting your liver,” she said.

“If it can be detected early enough and people can come and off load then it’s a win-win situation for the Red Cross because they can use the blood.”

Mrs Stevenson’s blood will be used to save babies with cancer.

An art exhibition at Deloraine Hospital will raise awareness and funds with 30 per cent of the sales donated to Haemochromotosis Australia.