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Craig’s Alpha-1 Story | ALPHA-1 UNWRAPPED EPISODE 1 LIVE

Craig’s Alpha-1 Story | ALPHA-1 UNWRAPPED EPISODE 1 LIVE


Craig is 60 years old and based in Sydney, Australia. His Alpha-1 genotype is ZZ, with 46% lung capacity. Here we dive into his Alpha-1 story where he discusses the everyday challenges he faces and the long journey it took for him to be finally diagnosed with the condition. 

Living with Alpha-1 Antitrypsin Deficiency 

The condition impacts all aspects of Craig’s life. He was a very sporty individual growing up and a keen swimmer, but has been unable to take part in any sort of physical activity as the condition has worsened. He also works in the hospitality industry and tells us the physicality of the job brings its own challenges. 

The journey to being diagnosed with Alpha-1 Antitrypsin Deficiency 

Craig first heard about Alpha-1 when his niece was diagnosed with chronic asthma 15 years ago and confirmed to be carrying the ZZ genotype. At that time, Craig did not think about getting tested himself, but one afternoon after struggling to catch his breath from swimming he went to visit his GP. Initially most of the health professionals didn’t understand the problem and he was misdiagnosed with emphysema. It was only 5 years ago, when Craig was referred to St Vincent’s Hospital in Sydney, he was finally confirmed to have Alpha-1 Antitrypsin Deficiency. 

How an earlier diagnosis would have helped 

Craig has no doubt that if he was diagnosed at an earlier stage in life it would have helped him. He has 4 younger siblings, 3 of which have the ZZ genotype and the advancement of the condition is significantly less progressed. He believes that a change in his lifestyle and being put into the health system from a younger age would have meant a better quality of life now. 

Interactions with health professionals

18 years ago there was very limited recognition of the condition, but over the last 5 years Craig acknowledges that GP’s have a greater understanding of Alpha-1 Antitrypsin Deficiency. He is unsure if they would be able to diagnose the condition, but he believes overall awareness has significantly increased. 

Craigs advice for anyone suffering with lung problems 

“For anybody suffering with any sort of lung issues, if you have any concerns, see your GP. The blood test is incredibly simple. I have learnt over the last few years that once you’re in the health system the difference to your life and health is profound. Get checked.” 

Stay tuned on our social channels and blog for more Alpha-1 Unwrapped stories and advice throughout Alpha-1 Awareness Month this November.


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