You may not have heard of alpha-1 antitrypsin deficiency (A1AD) – that’s fine, not many people have. It’s quite often one of those conditions that you only hear about if either a family member or someone you know is affected by it. It’s an inherited genetic disorder, the only known hereditary risk factor known to cause COPD (Chronic Obstructive Pulmonary Disease). COPD is an umbrella term for the disease emphysema or chronic bronchitis. If you have COPD it means the breathing passages (airways) in your lungs are compromised and lung tissue is damaged. Alpha-1 antitrypsin deficiency not only raises your risk of lung disease but can also have a damaging effect on a person’s liver and occasionally inflammation in the fat layer of the skin.
There are various common signs that may mean you have this condition. For those whose lungs are affected, this can include shortness of breath, wheezing, chronic cough and sputum (phlegm) production, bronchitis, recurring chest infections, low tolerance to exercise, year-round allergies or bronchiectasis symptoms. Based on overseas figures it’s thought the condition may affect somewhere between 2,5003,500 individuals, often with European ancestry, in New Zealand. Many people are undiagnosed or misdiagnosed, and how the disease manifests itself is quite variable dependent on environmental influence. It may affect people’s lungs, liver, or both. Treatments offered at present are the same as those offered for people with emphysema. Inhalers and other medications can also help. Currently there is no cure for A1AD.
In order to shine a light on this oftenhidden condition, we sat down with Allison Croft, a friend of Asthma and Respiratory Foundation NZ, to help us de-mystify the condition and to share with us her experiences of living with alpha-1 antitrypsin deficiency (A1AD).
“It’s been a long journey, and I have seen many health professionals, but not many people know and understand this condition.”
“I’ve really had to try and find out as much as feasibly possible by myself. It all started with persistent coughing, for about nine months of the year particularly over the winter time. I went to the doctors on the advice of a family member, who had been diagnosed with A1AD. She thought it may well be the same. The blood test confirmed that it was A1AD. All I could feel at this point was relief. At least now I knew what the condition was. However, nothing really happened for about five years. Looking back, I didn’t take the diagnosis seriously enough. I just followed the general advice and used inhalers. It was not until two years ago, I had a bad reaction to a new combo inhaler. I lost my voice, and I couldn’t sing or do the normal things I wanted to do, it was truly awful. It was Christmas 2016, and it was terrible for me personally not being able to sing. I love singing! This was the turning point that motivated me to change my lifestyle and look at this condition differently.
“I’m now in a really positive place and I have learned so much along the way. What I have found is that changing some very simple things in my lifestyle has really helped my overall health and wellbeing.
“Now I’m able to travel around the world.”
I have the confidence to manage the condition myself and have practical, informed conversations with health professionals. I’m so pleased that I can share just a little bit of my story with you. Even getting more awareness out there around the name and that this potentially debilitating lung condition exists, is great news.”
Allison continues, “For me it’s been a trial and error situation. Looking at things that work for me and those that don’t; this is in terms of anything and everything from what I wash my clothes in, what I put on myself, what I eat and drink. A1AD sufferers have to be so careful that they don’t irritate their lungs. They basically must look after them 24/7. I now use only lung and environmentally friendly household cleaning products, many of which I make myself with citrus oil from citrus skins. It really has made a huge difference focusing on what I surround myself with. I am very careful now about what I eat and drink, for me that’s been lots of leafy greens and cutting down on red meat. I also cut
out tea and coffee; smoothies and green tea all the way! It’s made a huge difference. I’ve also found plant-based milk products work best for me. I hardly rely on inhalers at all now with some lifestyle changes.”
“I couldn’t have done all this without the support of my wonderful husband, and family and friends. It’s such an individual condition, that if people do suffer from it then it’s finding out what works for them. I have since found a number of support groups, and more and more information is popping up on the internet which is also fantastic. There’s definitely hope. People need to visit their doctor if they have concerns they may be affected by this condition and request a blood test form specifying that their alpha-1 antitrypsin level be tested. It tends to run in families, due to it being a genetic inherited disorder. I’m almost certain my aunty and cousin who died of an asthma attack had it too, but A1AD was never diagnosed and likewise with other family members. My older sister was the one who was diagnosed first in our family and then encouraged me to ask for the test to be taken. It’s certainly a journey, one that you can’t do alone, but with the right support and lifestyle changes you can change your life around like I did.”
Allison making a lung friendly cleaning product from citrus skin and white vinegar Walking the Camino de Santiago in Spain
Enjoying the beautiful scenery in Europe
These are great tips that may be applied to anyone who may struggle with a respiratory condition.
• Make sure you keep hydrated, I can’t over-estimate this enough
• Make sure you get the flu vaccine before the winter
• Look at simple lifestyle changes that will assist you – what you put in and on your body
• Listen to your body, and get to know it better • keep away from unwell people and wear a mask in winter
• Wear a mask if you are going on an aeroplane – this really works for me
• Keep away from any type of smoke
• Keep warm in bed, I love to wear bed socks
• In the winter I use Vicks, or a similar product in my nose and on my chest
• Reduce any exposure to lung irritants – especially around the home
• Check out what is in your household products, change the ones you use if you feel they are irritating you
• Ensure you eat a healthy diet, lots of leafy greens works a treat
• Cut down on tea and coffee –smoothies and green tea are great alternatives
• Build up your exercise and maintain a level of fitness and a healthy weight
• Become more informed.
For more information and support Email firstname.lastname@example.org Website www.alpha1.org.nz Facebook Alpha-1 Association New Zealand