Living with alpha-1 antitrypsin deficiency
AATD is a rare and complicated condition. We cannot predict exactly what will happen to you or your child. But we do have lots of information and support to help you live with AATD.
The information on this page is for:
- Adults and children with A1ATD or suspected A1ATD.
- Family, friends, carers, and healthcare professionals.
On this page:
Looking after the liver
There are lots of things you can do to support the liver. In children, AATD liver disease can happen very quickly. But in adults it is like most other liver conditions. The damage builds up very slowly over many years.
The liver has an amazing ability to cope with damage and repair it. But there is only so much it can take. If it is getting damage from other things as well it is more likely to become a problem. Making some changes in your everyday life could help to reduce that extra damage.
Diet
There are no specific foods that someone should eat or avoid to help AATD.
But being overweight or eating an unhealthy diet can cause fat to build up in the liver. This can damage the liver cells.
If the liver is healthy
If the liver is doing well aim for a healthy balanced diet with lots of fruit and vegetables. Keep foods high in fat or sugar for occasional treats not everyday foods.
For adults – if you are overweight, aim to come slowly down to a healthy weight. This can be very difficult. Getting help can make it easier. Talk to your GP to find out if there are any services in your area.
If there is serious liver damage – Adults
Your liver is very important for getting the energy and nutrients out of food. If your liver is struggling to work, it can be hard for you to get the nutrition you need.
If this happens you will need expert personal advice.
You can talk to your liver medical team. Or ask for a referral to a specialist NHS dietician.
Find out more about eating problems
If there is serious liver damage – children
While your child is unwell you might need to change their diet to make sure they get all the energy and nutrients they need. If this happens you will be referred to a specialist dietician. They will be able to give personal advice. This could include:
- Special milk that is easier to absorb than breast milk or normal formula
- Special high calorie drinks for older children
- Extra vitamins
Find out more about nutrition for children with a liver condition.
Supplements
If someone is very unwell doctors might suggest they take some vitamins or other supplements. These will usually be different to the type you can buy in shops or online. They are designed to be better absorbed by someone with a liver problem.
There are no other supplements that have been shown to help with AATD.
Supplements can sometimes cause liver damage that could add to the damage from AATD. This includes some:
- supplements
- natural, complementary and alternative medicines
- weight loss supplements and medicines
Always check with a doctor before trying any of these treatments if you have a liver condition.
We have lots more diet information in our Eating drinking and keeping active section.
Vaccines
Infectious disease can cause damage to the liver or lungs. The best way to prevent this damage is with vaccinations. This includes all the normal childhood vaccines and the seasonal flu vaccine.
The eligibility for the COVID-19 vaccines changes regularly. You can find the latest on our COVID-19 page.
Ask the medical team if any extra vaccinations are needed. For example, if you are an adult and missed any when you were a child. Or if you are travelling to an area where extra vaccinations are recommended.
Find out more about protecting yourself from infectious diseases
Alcohol
Alcohol causes liver damage. Exactly how it affects AATD is unclear.
Adults
Many people with AATD decide not to drink any alcohol. If you do, stick to the UK guidelines. This is a maximum of 14 units a week, spread over several days, with 2-3 days in a row with no alcohol.
Teenagers
It’s helpful to discuss alcohol risks with teenagers who have AATD. These risks can differ from those faced by their friends.
More young people than ever are choosing not to drink alcohol. Many young adults with a liver condition say they didn’t feel pressured to drink after explaining their situation to friends.
Smoking
Smoking is bad for the liver and lungs. It increases the risk of cancer and many other conditions.
For someone with AATD, smoking is particularly risky.
Some people with the genes for AATD will only develop the condition if they also smoke. They are also more likely to develop serious lung disease a lot younger than other smokers.
If you are already a smoker then giving up can still help. Getting support makes it more likely that you will successfully stop smoking. Talk to your GP about local support or see our smoking webpage for more information.
Keeping active
Keeping active has a range of benefits. It can help with mood and if you have deliberately lost weight it can help you to keep it off.
Adults
Start where you are and try adding a little bit more activity. If the habit sticks, add a little bit more. You are more likely to make a long-term change this way than by trying to make a really big sudden change.
You could try:
- Walking around the block every morning
- Going for a swim
- Joining a friend on a dog walk
- Getting up and doing some stretches whenever the adverts come on TV
Children
Young children usually don’t need to be encouraged to be active if they are feeling well. But of course this is different when they are very poorly.
If your child is not as active as usual and doesn’t want to do their normal activities always talk to a doctor.
Helping older children to stay active will help them get into good habits for the future. And could help protect their liver from damaging fat build up when they are older.
Contact sports
People with AATD can also have an enlarged spleen. This can be at risk of getting damaged if someone takes a hard knock or fall.
Before you or your child tries a contact or high -impact sport, speak to your medical team. They can help you understand any risks involved.
Planning a family if you have alpha-1 antitrypsin deficiency
Most people with AATD can have a family if they want.
Contraceptives
AATD doesn’t normally affect the choice of contraceptive. If you are trying a hormonal contraceptive, tell the doctor or nurse that you have AATD.
Planning a family
If you are planning to start a family, you can talk to your medical team about the chances of passing AATD on to your baby. This will depend on which genes you have and the genes of the baby’s other parent. You may be referred to a genetic counsellor. They can help you to understand the chances and your options.
Pregnancy if you have alpha-1 antitrypsin deficiency
Most people with AATD are diagnosed in middle age, often after they have had children. This means there is not a lot of research into how AATD affects pregnancy. A large study in Denmark found that having AATD can raise some pregnancy risks. This included:
- Preterm birth (the baby being born early)
- Low birth weight (the baby being small)
They also found a higher rate of C-section births.
If you are pregnant and have AATD you may need extra monitoring. Tell your pregnancy care team about your AATD. They should work with your AATD team to make a personal plan for your maternity care.
More detailed information
The following pages give more detail on some aspects of A1ATD.
Alpha-1 antitrypsin deficiency
My child has just been diagnosed with A1ATD – what now?
Causes
Who is at risk?
Signs and symptoms
Tests and diagnosis
Treatment for children
Treatment for adults
Future treatments
Living with A1ATD
More on A1ATD genetics
How do genotypes affect A1ATD liver damage?
Support
How Liver UK can help
A diagnosis of liver disease can be worrying, and you may have a lot of questions.
We're here for you and for your family and friends. Whether you have questions or just need someone to listen, we can help.
Your feedback
This content was last reviewed: June 2026
Our expert reviewers:
We would like to thank everyone who helped with creating and reviewing this page. Including Dr Bill Griffiths, consultant hepatologist, Cambridge university hospitals, Professor Dino Hadzic, consultant paediatric hepatologist, King’s college hospital, Dr Girish Gupte, consultant paediatric hepatologist, Birmingham children’s hospital. And all our patient and family reviewers.
Liver UK thanks Takeda UK for their kind donation to support the development of this information. Takeda UK has had no influence in the initiation, development or content of this project.
Find out how we make our patient information.
Everyone’s experience of liver disease will be different. Always talk to your specialist medical team for personal advice.
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