Depending on the patient’s age or socioeconomic status, AL amyloidosis might affect some areas of your life in a different way. Working-age AL amyloidosis patients will probably have to take some time off work or talk to their employer to get a more flexible approach towards working hours and conditions.

 

Managing work and AL amyloidosis

If you are diagnosed with AL amyloidosis, you might want to discuss this with your employer. A doctor or nurse can provide written confirmation of the diagnosis and may also be able to provide an explanation on how this may affect your ability to work. It may be necessary to take time off for tests and treatments, possibly involving inpatient hospital stays. Many employers may be open to taking on a more flexible approach towards working hours and conditions, and reducing the level of responsibility at work in case that might be required.

Caring for dependents, like children or elderly parents, may become difficult for patients and it might be worthwhile to make some other plans for their care, for example, arranging for someone to care for them in case you need to go to hospital for some time. These plans may not need to be implemented, but their existence can be reassuring, and in case you may need to go to the hospital at short notice for treatment or care, such plans may prove to be very useful.

 

Insurance, financial and other issues

Living with AL amyloidosis, as well as treatment approaches, may make it difficult for you to stay in the working environment. It may become necessary to take a significant amount of time off work or quit, which can give rise to financial worries and difficulties. However, governmental support may be available, and patients are often eligible for a number of benefits. These vary from country to country, but in many cases provide for a living or personal independence allowance, support to pay for a carer, or a tax allowance. If you continue working, you may be entitled to a statutory support allowance, if you are not eligible for sick pay from your employer. Relatives or friends looking after you may be able to claim a carer’s allowance.

Advice on the various available benefits can usually be obtained from nurses and social workers at your hospital, or from community, patient or citizen groups, or online.

 

Getting help and looking for resources

You can find support and information from many sources. First and foremost, your own medical team should be your main reference source, as only the members of this team will have full knowledge of your individual condition and what treatments are working, or have been less successful.

This team will include your consultant haematologist, specialist nurses and general practitioner. Depending on your exact combination of symptoms, you may also be advised by specialists in particular systems of the body, e.g., a renal specialist, if you have kidney problems, or a neurologist, if you have neuropathy. You should also have access to social workers or a community advice bureau for questions relating to social care or finance.

You may find that information from the internet is variable in its quality and level of detail, and healthcare systems vary slightly in every country. An excellent starting point for information relevant to your own country is the website of your own national amyloidosis association (if one exists in your country), or Myeloma Patients Europe. Many of these associations can put you in touch with support groups where you can talk and exchange experiences and problems with other patients, and also professionals. Some have online discussion forums, where you can chat with patients wherever they live. Patient organisations can provide access to valuable information about the disease and treatment options, which healthcare professionals to turn to, self-caring and career suggestions etc. They might be hosting social events as well, and attending these can be a motivating, informative and positive experience. Examples of such groups are:

 

• Leben mit Amyloidose: www.amyloidosis-austria.at
•  Association Française contre l’Amylose : www.amylose.asso.fr
•  Amyloidose Selbshilfegruppe: www.amyloidose-selbsthilfe.de
•  Amyloidosis Israel: www.amyloidosis.org.il
•  Associazione Italiana contro leucemi limfomi e mieloma (AIL): www.ail.it
•  North Macedonia. Association for help and support of patients and their caregivers with hematological diseases (HEMA): hema.org.mk
•  Amyloidosis Foundation Netherlands (SAN): www.amyloidose.nl
•  Blodkreftforeningenn: www.blodkreftforeningen.no
•  Slovak Myeloma Society (SMyS): www.myelom.sk
•  Association of Patients with Blood Diseases Slovenia: www.drustvo-bkb.si
•  Asociación Española de Amiloidosis (AMILO): www.amilo.es
•  United Myeloma UK:  www.myeloma.org.uk

 

Alternatively, you may consider reaching out to an umbrella organisation (like MPE) or other non-profit organisations that represent AL amyloidosis patients for support and information. Examples of such organisations are:

• Amyloidosis Alliance: amyloidosisalliance.org
•  Amyloidosis Foundation: amyloidosis.org
•  Amyloidosis Research Consortium: arci.org