Living with AL amyloidosis

Your reaction to receiving a diagnosis of AL amyloidosis may vary from feeling a sense of shock, anxiety, feeling overcome or numb, or you may feel angry or frustrated. All of these emotional reactions are completely natural. It is also normal to feel a sense of slight relief, because at last you have found an explanation for how you’ve been feeling and find it better to know than to worry. This is a very natural reaction too. 

The diagnosis may provide a chance to appraise what is most important to you as well, and could bring you closer to your partner, family and friends. It may also prompt questions about how long you can expect to live. This is very hard to answer, as that is largely determined by which of your organs are affected and to what extent, as well as by how well you respond to treatment. 

It can be very helpful to learn about the disease, so that you understand more clearly what your diagnosis means, and so that you are able to formulate what you need to ask your doctors. It will also help you to talk to your family, as they will also try to understand more about AL amyloidosis. Take your own time to find out about AL amyloidosis, as it is easy to become overwhelmed. If you look for information sources on the internet, it’s important to find reliable sources such as medical organisations, rather than websites where you read opinions that may not be reliable. Also remember that the information you find online should supplement – and not replace – the advice and guidance from your medical team, which is designed for you as an individual.

It can, of course, feel very difficult to explain to the people close to you that you have AL amyloidosis. It may help if you tell one or two and ask them to explain it to the other people you feel will need to know. Some patients find it easier to tell people by phone rather than face-to-face. 

Talking about the disease with those closest to you can be a great source of support and help, and may prevent you from feeling isolated. Your partner, family and friends may also be feeling anxious about you and perhaps afraid of upsetting you by asking too much. It does help to talk, not just about the disease but about everyday things as well.

Coping with symptoms

The symptoms of AL amyloidosis vary from patient to patient and largely depend on which organs are affected by the condition. Generally speaking, however, it is important that you take care of your general health and consult your doctor and healthcare team about any observed changes to your well-being. If they are aware of any symptoms or treatment side effects you are experiencing, they may be able to help you manage them, or prescribe medications to alleviate them. Symptoms and treatment side effects can largely overlap; a more detailed description of these can be found in the section Symptoms of AL amyloidosis.

Preparing for medical check-ups

You will have regular check-ups from the time of your diagnosis – the frequency may vary in different countries of Europe, but they are likely to be every few weeks and will be set by your physician.

Because AL amyloidosis is a complicated condition and you may have questions about many aspects of your symptoms, feelings and treatments, it is a good idea to think carefully about what you want to ask before your check-ups, so you can ensure everything is covered. Taking a written list of questions and concerns along for your check-up might be helpful to make sure none of your questions remain unanswered. Taking notes during your appointments is a good idea as well, so you can ensure you have all the necessary information at hand after the check-up.

Get the PDF!

Click on the button below to download the MPE AL amyloidosis patient guide on PDF format.