This website for the UK public is developed and funded by AstraZeneca as part of a disease awareness campaign. It is for information only, not for diagnosis. If you are concerned about symptoms, please see your GP or another healthcare professional.
ATTRv amyloidosis is a rare condition. You may have lots of questions about what it is, what causes it and how it can affect a person‘s day-to-day life. On this page, you‘ll find answers to some commonly asked questions. Learn more below, from recognising symptoms to preparing for an appointment with your doctor.
Understanding ATTRv amyloidosis
ATTRv amyloidosis is a rare but serious condition. It can affect different parts of the body and cause life-limiting symptoms. ATTRv amyloidosis happens when a protein known as transthyretin, or ‘TTR’, changes shape and clumps together. This builds up to form something called ‘amyloid deposits’. These can build up in organs and tissues.
Visit Understanding ATTRv amyloidosis to learn more about the symptoms to look out for.
ATTRv amyloidosis can affect many parts of the body. It can affect the nerves, gut, kidneys, liver and heart. This can cause a wide range of symptoms that can vary from person to person. Even members of the same family who all have ATTRv amyloidosis can have different symptoms.
Visit Understanding ATTRv amyloidosis to find out more about the different symptoms.
ATTRv amyloidosis is a rare condition. The hereditary type is estimated to affect between 1 and 9 out of every 1,000,000 people in the general population. However, it is more common in families with Portuguese heritage. For example, about 1 in 538 people with heritage from the North of Portugal are thought to be carriers of the V50M mutation. If you have family heritage from Portugal, it is really important to know what signs to look out for. You should also find out how genetic testing can support you and your family.
Visit Getting a diagnosis to find out what being diagnosed with ATTRv amyloidosis might mean for you and your family.
ATTRv amyloidosis can be passed down through families. Each child has a 50% chance of receiving a mutated gene from a parent who carries it. Not everyone who has the mutated gene will be affected by symptoms.
Visit Understanding ATTRv amyloidosis to learn more.
Getting a diagnosis
It can take some time to get a diagnosis of ATTRv amyloidosis. This is because the condition is so rare and many symptoms can look like other common conditions. Depending on what symptoms you have, your doctor will likely refer you to a specialist. The specialist will ask about your symptoms, perform a physical exam and ask about your family history. Further tests may be needed to reach a diagnosis, such as testing for a genetic mutation.
Visit Getting a diagnosis to learn more about this process.
Being prepared for your appointment can help you feel more confident. You may find it helpful to download the guide below, where you can find guidance on how to:
- Prepare for an appointment
- Explain that you are at risk
- Discuss your symptoms
Download the ‘Talking to my doctor about ATTRv amyloidosis’ resource.
It is important to have an early conversation about genetic testing when someone in the family has been diagnosed. This is because ATTRv amyloidosis can be inherited. It may be hard to start these conversations. But the earlier you talk about genetic testing, the sooner you can find out how ATTRv amyloidosis may affect you and your family. A genetic counsellor can also support you during this process.
Visit Getting a diagnosis to find out more about genetic testing and the role of a genetic counsellor.
Living with ATTRv amyloidosis
This website includes trusted information about ATTRv amyloidosis, from knowing what symptoms to look out for, to finding practical day-to-day support. There are also ATTRv amyloidosis charities and groups that can help you connect with others who may be facing similar challenges.
Visit Support groups to explore how these groups can help you and your family.
Each person’s experience with ATTRv amyloidosis is different and symptoms can vary from person to person. Your healthcare team can help you find ways to manage your specific symptoms. For example, if you have nausea (feeling sick) or vomiting (being sick), eating smaller amounts and avoiding spicy food can help.
Visit Living with ATTRv amyloidosis to explore more tips on how to manage symptoms.
Living with ATTRv amyloidosis can make life more challenging. But there is help available for you and your family. If you are registered as having a disability due to your ATTRv amyloidosis symptoms, you may be entitled to financial aid or support with funding travel or leisure activities.
Visit Finding support to learn more.
You may find that your symptoms mean you need to adjust your working patterns or take more time off sick. Many workplaces offer adjustments to support people living with long-term conditions such as ATTRv amyloidosis. These might include changes to your working hours or your physical workspace.
Visit Living with ATTRv amyloidosis to find out what workplaces might offer.
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- Amyloidosis Research Consortium. Disease Overview: Hereditary Transthyretin Amyloidosis. Available at: https://arci.org/wp-content/uploads/2025/10/WEB-Booklet-1_hATTR_05052022-RC-1.pdf. Accessed August 2026.
- Coelho S. Big feat solving Little Feet’s. iSGTW. 2011. Accessed August 2026.
- Amyloidosis UK. About ATTR Amyloidosis. Available at: https://amyloidosisuk.org/about-amyloidosis/types-of-amyloidosis/attr-amyloidosis/. Accessed August 2026.
- Orphanet. Hereditary ATTR amyloidosis. Available at: https://www.orpha.net/en/disease/detail/27186. Accessed August 2026.
- Obi CA, Mostertz WC, Griffin JM, et al. Methodist DeBakey Cardiovasc J. 2022;18(2):17–26.
- Verywell Health. Overview of hATTR Amyloidosis. Available at: https://www.verywellhealth.com/hereditary-amyloidosis-hattr-8551871. Accessed August 2026.
- NHS. Amyloidosis. Available at: https://www.nhs.uk/conditions/amyloidosis/. Accessed August 2026.
- NHS. Coping with nausea and vomiting. Available at: https://wessexcanceralliance.nhs.uk/wp-content/uploads/2022/05/Coping-with-nausea-and-vomiting.pdf. Accessed August 2026.
GB-77628 | August 2026 | To be reviewed August 2028