Unions and law firms are calling for national assistance and guidelines for workers who are in danger of contracting a deadly lung disease.

Ben Harrison and Daniel Lewis are in their 30s and cannot play with their children for more than 10 minutes.

Both began their stonemasonry careers in Queensland when they left school, each spending a decade in the trade.

Neither had heard of silicosis until they were diagnosed with the lung disease, and had their lives ripped from under their feet.

For two men who have never met each other, their stories are eerily similar and they are not alone.

One in five stonemasons in Queensland have been diagnosed with silicosis, following extensive testing by the state government.

The lung disease can be caused by inhaling certain dust particles, usually from cutting manufactured stone benchtops.

Ben Harrison currently has no support or compensation since he was forced out of work in April 2019.

He left Queensland and his career as a stonemason three years ago, to buy a dream home with his family in Tasmania.

He told AAP his family were living the lifestyle they wanted until he was diagnosed with silicosis, which was caused by his 10 years as a stonemason in Queensland.

He now can't work to support his young family, had to sell the dream home and faces an uncertain future.

"We are selling our assets just to get by each week," he told AAP.

"My parents and grandparents are beside themselves. It has honestly been a nightmare."

The physical and emotional stress is the most difficult aspect for the 30-year-old who said playing with his kids leaves him breathless.

It is the same for Daniel Lewis, 32, who was forced to quit the only job he has ever had.

"I can barely run 10-15 minutes outside with my kids," Mr Lewis told AAP.

"I was a stonemason for 15 years and never heard about silicosis until I got pulled from my job."

Mr Lewis is currently re-training to be able to be employed again, and is working as a mentor for other sufferers through the Silicosis Support Network.

"I am not going to sit back and die, I've got 30 more years of work left," Mr Lewis said.

Tales like these have led to calls across the country for national regulations for safe working environments, health screenings and care for those who contracted the disease.

"The awful fact is that this silicosis epidemic among stonemasons is increasingly hitting young guys in the prime of their life, sometimes with young families," said Jonathan Walsh, principle at Maurice Blackburn Lawyers.

"Every government in Australia should be working to urgently find out exactly how many of these workers have silicosis so we can do what's needed to help support them.

It is a sentiment shared by the CFMEU's Nigel Davies.

"Silicosis is a terrible disease which is devastating lives around the country," he said.

"The speed with which this disease kills and debilitates people means there is no time to waste."