Life with amyloidosis can present a variety of challenges, but people diagnosed with the condition can still live productive and fulfilling lives. The right treatment plan and daily support can help you feel as well as possible.

Here are tips to help make your days a little easier.

Maintain a Healthy Lifestyle

Eating a healthy diet, getting enough exercise, managing stress, and not smoking are all factors that contribute to your overall health. Focusing on these actions can help you better manage life with amyloidosis.

Diet

In general, eating a balanced diet can help give your body the energy it needs to manage amyloidosis. If amyloidosis affects your kidneys or heart, your care team may recommend specific dietary changes.

For instance, reducing your sodium or protein intake may be necessary if your kidneys or heart are involved. Your doctor or a registered dietitian can help you devise the right diet plan for your needs.

Before taking supplements, talk with your care team.

Exercise

Regular movement can help support your overall health as you deal with amyloidosis. Exercise may be difficult, depending on your type of amyloidosis. Certain types of amyloidosis — cardiac amyloidosis, in particular — may make exercise more challenging.

Talk to your doctor before you begin any new exercise routine or program. Your care team can help you choose activities that are safe for you.

Stress Management

Living with amyloidosis can bring emotional stress, anxiety, or depression. Managing emotional stress is an important part of self-care with cardiac amyloidosis.

If you need help coping with stress or other mental health symptoms, talk to your doctor about options for support, such as:

• Psychotherapy (talk therapy)
• Online or in-person amyloidosis support groups
• Medication
• Mindfulness training
• Physical activity

If amyloidosis makes daily life feel isolating or lonely, it may also help to connect with others who understand life with this rare chronic illness.

Smoking

If you smoke, quitting can improve your health and quality of life, no matter how old you are or how long you’ve smoked. This is true whether you have amyloidosis or no health issues at all.

For people with amyloidosis, smoking cigarettes could make symptoms more difficult to manage and potentially impact how well treatments work. There are many heart benefits to quitting smoking, so this is especially important if your amyloidosis impacts your heart.

Talk to your healthcare provider for smoking cessation support.

Family Life With Amyloidosis

Family dynamics can change when someone has amyloidosis or any chronic illness. Household tasks can become difficult at times, and some responsibilities may shift. Family members may need to provide medical care and offer more emotional support than they did in the past.

Open and clear communication is important so that expectations are understood by both the person with amyloidosis and the family members providing extra support.

Parenting With Amyloidosis

In most cases, people with amyloidosis are diagnosed after age 50, so they may have older or adult children. Even if your children are living independently, it can still be destabilizing for them to deal with a parent getting sick.

Below are some tips for parenting adult children when you have amyloidosis:

• Be transparent about your diagnosis. Hiding the truth can lead family members to worry even more.
• Suggest ways your children can support you. That may include attending medical appointments, stocking up your freezer, or hiring a cleaning service to take household chores off your plate.
• Keep communication lines open while ensuring you have other outlets for emotional support. Support groups or a therapist can be important resources.

If you have younger children, you may be balancing your child’s emotional needs with the day-to-day pressures of parenting. Here are some tips to help if your children are younger:

• Tell the truth in an age-appropriate way. You can ask your hospital system if they have a social worker or child life specialist who can guide you.
• Help set expectations by talking about potential changes in their daily routines and any changes in your daily habits. You can also discuss anticipated physical changes you may undergo.
• Ensure that your children have outlets for emotional support.

Working With Amyloidosis

If you can work but need special accommodations, talk to your human resources department.

For instance, amyloidosis can cause carpal tunnel syndrome, which can make typing on a standard keyboard painful. Have your doctor document the way amyloidosis affects you so you can get the help you need at work.

Disability Benefits for Amyloidosis

If you cannot work and have not been able to do so for 12 months because of amyloidosis, you may be eligible for disability benefits. You will need to apply for these benefits and submit clinical documentation of your condition in order to receive them.

Traveling With Amyloidosis

Depending on how amyloidosis affects you, you may need to change your travel plans or methods so you can take trips without making symptoms worse or interrupting your care. Talk to your healthcare team if you’re planning to travel so your trip won’t interrupt your treatment plan.

Carefully assess what medications or supplies you’ll need for traveling, and organize essentials well in advance of your departure date.