How might ATTR-CM impact your life?

Living with ATTR-CM. Recognise different symptoms, adapt your routines, support your wellbeing

How might ATTR-CM impact your life?

Adjusting to life after a diagnosis of transthyretin amyloid cardiomyopathy (ATTR-CM) may feel challenging at times. You might notice changes in your daily routine, emotional wellbeing, and relationships, as you manage symptoms, start treatment, and attend regular check-ups. But you are not alone. There is support available to help you live well with ATTR-CM.

“People want to know about the disease, what they should look out for, and the emotional side too—'Is it normal to feel tired all the time?’” – Moderator of online support group

“It’s not just people living with ATTR-CM that are looking for information, but it’s also their wives, partners, daughters, sons.” – Moderator of online support group

Day-to-day life

Daily activities, such as socialising, working, taking part in hobbies, or household chores, may feel more tiring or take longer than before. While this can be frustrating, making small adjustments to your daily life can be helpful.

Emotional effects

Being diagnosed with ATTR-CM can feel overwhelming, and it is common to feel anxious, worried about the future, or low in mood at times. These feelings are a normal part of adjusting to life with a long-term condition, but there are ways you can help to manage these feelings.

Strain on family and caregivers

ATTR-CM may also affect someone you know, including your family members, friends, and caregivers, but they may feel unable to show or share their concern.

For caregivers or family members supporting someone living with ATTR-CM, more information and support can be found here.

“People often look for information on ‘What does this diagnosis mean for my life?’ People want to know about the disease, what they should look out for, and the emotional side too—'Is it normal to feel tired all the time?’”

Moderator of online support group

Managing ATTR-CM

With support from your healthcare team, caregivers, friends, and family, you can adapt your daily routines and learn how to best manage your condition.

You do not need to carry the weight of life with ATTR-CM on your own. Support is available for both your physical and mental wellbeing.

Maintaining daily activities and staying active

While being diagnosed with ATTR-CM is a big change, staying involved in your hobbies and social life can bring structure, enjoyment, and help take your mind off your condition.

It is also important to keep your body moving every day, as it helps maintain strength and fitness, while also supporting a positive mindset.

Physical activity may look different for different people—anything that gets your body moving will help, for example, gardening or going for a gentle walk. Talk to your doctor about what types of physical activity are safe for you.

As well as staying active, managing stress through practices such as mindfulness and breathing exercises, or spending time outdoors, can help. Eating and sleeping well is also important to support your overall health.

To learn about how you can adapt your diet to help manage ATTR-CM, see our page on ‘Eating well’.

Daily activities like socialising and housework can feel more tiring and take longer. Adapting to these changes can cause anxiety, strain and low mood.

Following treatment plans and attending check-ups

Your doctor will tell you which treatments you should take and how to take them effectively. Taking your treatments correctly, for example, at the right dose and time, will ensure you get the most benefit.

If you are given pills as part of your treatment plan, consider using a pillbox and setting reminders to help you take them correctly.

It is also important to check in regularly with your expert doctor throughout your journey with ATTR-CM. Check-ups help your doctor track your symptoms, answer any questions you might have, and adjust your treatment if needed. Download the simple table below to help you keep track of your symptoms.

Ask your doctor how to make follow-up appointments and how often you should see them.

Support groups and the role of friends, family, and caregivers

Sharing how you feel with people close to you can help them understand and support you in managing ATTR-CM and motivate you to carry on living a full and active life. Let them know how they can help, from giving you lifts to appointments to simply listening to how you are feeling.

Support groups provide an opportunity for people living with ATTR-CM, family members, and caregivers to connect with others who understand what they are going through. There are support groups available across the world for people with ATTR-CM, and many are online, allowing you to join from home.

Support groups can be used to share tips, experiences, and questions with people who also live with ATTR-CM. Connecting with other people affected by ATTR-CM can offer comfort and information that those close to you may not always be able to provide.

Visit our page on further resources to find links to additional support.

Protecting your mental health

Looking after your mental health is just as important as looking after your physical health. Leaning on those around you, whether that is your friends, family, caregivers, or people from a support group, is an important step to coping with your emotions.

Another option is to seek professional mental health support. There are different types of therapy and counselling available, including group therapy or one-to-one sessions. In either case, they offer time and space for you to talk about your feelings, ask for advice, and learn about coping strategies from an expert.

If your ATTR-CM is affecting the way you feel, ask your doctor about the different ways you can receive support for your mental wellbeing.

You can also try simple wellbeing tools such as:

Practising meditation or mindfulness
Taking time to be in nature
Breathing techniques

ATTR-CM symptom tracker

ATTR-CM symptom trackerPDF (0.18 MB)

Watch this 38-second video with Professor Marianna Fontana to learn about how you can still live well with ATTR-CM.

Professor Marianna Fontana is a Professor of Cardiology and Honorary Consultant Cardiologist at the National Amyloidosis Centre, London, UK.

Transcript

Absolutely. Maintaining the quality of life or improving the quality of life and what we call the functional capacities of the ability to do all the daily activities that you want to do during in the day is one of the main goals of the treatment. So I would say it is not just one of the things that we hope to get, but it’s actually what we really want for the treatment of this condition.

Adjusting to life after a diagnosis of ATTR-CM may feel challenging at times. Leaning on those around you is an important step to coping with your emotions.

To explore topics in other sections, click on the links below:

Supporting someone with ATTR-CM

Define your role, build a network, look after yourself

Further support

Explore common questions, understand key terms, pronounce complex words

What is amyloïdose?

Understanding amyloidosis: Know your condition, understand your type, recognise your symptoms

Managing ATTR-CM care

Recognizing early signs and symptoms of ATTR-CM can help support timely diagnosis.

References

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Ponti L, et al. Front Cardiovasc Med. 2023;10:1238843.
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Rintell D, et al. Orphanet J Rare Dis. 2021;16(1):70.
3
World Heart Federation. Living With Transthyretin Amyloid Cardiomyopathy: A Toolkit for Patients. Available at: www.world-heart-federation.org/wp-content/uploads/WHF_ATTR-Tool-Kit.pdf (Last accessed: March 2026).
4
American Heart Association. Stress management. Available at: www.heart.org/en/healthy-living/healthy-lifestyle/stress-management (Last accessed: March 2026).
5
Mind. How to improve your mental wellbeing. Available at: https://www.mind.org.uk/information-support/tips-for-everyday-living/wellbeing/ (Last accessed: March 2026).
6
Grogan M, et al. Eur J Heart Fail. 2024;26:612–615.