David’s story of living with alpha 1-antitrypsin deficiency - Institute for Respiratory Health

David’s story of living with alpha 1-antitrypsin deficiency

Tuesday, August 04, 2020 | Community

L I F E has given me a new life!

Senior male supporting lung information and friendship for everyone

David lives with Alpha-1-Antitrypsin Deficiency or genetic emphysema and although having the condition from birth, he wasn’t diagnosed until much later in life. David’s lungs are irreparably damaged and continue to cause him issues. He likens it to breathing through a straw.

Once diagnosed, David was able to adjust his life and learn to cope with this progressive disease.

“Finding out about the L I F E Group has allowed me to review my lifestyle and put me in touch with other people in similar conditions,” said David. “I began to talk about my condition as I had not discussed this with anyone previously, except my wife. I had hidden it from my various employers and social circles.

“Talking breathlessly, coughing, no one gave me a look or condemned me. It was like a new beginning for me. L I F E brought me out of my shell and I feel more confident when I am asked ‘Why are you out of breath?’

“My normal response was ‘I was rushing around’ but now I explain the real reason why.

L I F E has given me a new life! It has given me knowledge, fellowship and support.”

The L I F E Group

The L I F E Group is a lung health support group that has been connecting people living with a chronic lung condition across Perth for over 27 years.

Run by, and for people, with chronic lung disease, their families, carers and supporters, members share their experiences and learn better ways to cope with lung conditions such as lung cancer, pulmonary fibrosis, chronic obstructive pulmonary disease (COPD) and asthma.

You’ll make friends and connect with other people living with lung disease, who know exactly what you’re going through. For more information please contact:

Jenni Ibrahim
T 9382 4678
M 0413 499 701
E life@resphealth.uwa.edu.au

Deputy Coordinator
Sal Hyder
M 0409 336 639
E salhyder1@gmail.com

Deputy Coordinator
David Payne
T 9405 7097
M 0439 048 897
E perthmillwall@yahoo.com.au

Alpha 1-antitrypsin deficiency

Alpha 1-antitrypsin deficiency is a rare genetic disorder in which the body’s ability to produce a protein called alpha-1 antitrypsin (AAT) is reduced, resulting in damage to the lungs and other organs like the liver and the skin.

When this condition affects the lungs, it causes emphysema, a part of COPD (chronic obstructive pulmonary disease) along with chronic bronchitis.

It is thought that one in 2,500 people in Australia have the genetic condition though most remain healthy, so few have been diagnosed.