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Living With Amyloidosis

Posted on February 01, 2022
Medically reviewed by
Mark Levin, M.D.
Article written by
Sarah Winfrey

Although life with amyloidosis can present a variety of challenges, people diagnosed with the condition can experience productive and fulfilling lives by proactively managing their disease. To enjoy your best life with amyloidosis, it’s important to take care of your body, manage stress, and communicate effectively about your condition.

Amyloidosis is a rare disease that occurs when the body produces many copies of an abnormal protein, called amyloid. Over time, these amyloid proteins build up in the body and impede (delay or prevent) its natural functioning. Medical treatment options can help you manage amyloidosis symptoms, and it is important to maintain your treatment plan as you adjust to life with the condition. You can also consider using the following strategies to optimize your quality of life as you manage amyloidosis.

Maintain a Healthy Lifestyle

Lifestyle factors can play into how you will feel after being diagnosed with amyloidosis. These factors include eating a healthy diet, getting enough exercise, managing stress, and not smoking.

Diet

In general, eating healthy will strengthen your body and provide it with the energy it needs to deal with amyloidosis. If you have specific complications of amyloidosis due to where your amyloid proteins are deposited, you may also be able to manage some of these complications through dietary changes. For instance, if amyloidosis is affecting your kidneys, you may need to lower your salt and protein intake or eat foods that act as diuretics to help improve the kidneys’ functioning. Your doctor or a registered dietitian can help you devise the right diet plan for your needs.

In addition to making recommended dietary changes, certain supplements may help amyloidosis. Ask your doctor about taking fish oil (which has omega-3 fatty acids), vitamin C, and quercetin (a plant pigment). Although there is little to no clinical evidence that these supplements will help amyloidosis in humans, both fish oil and vitamin C have shown to be useful in animal studies, and, anecdotally, some people with amyloidosis have reported benefitting from quercetin.

Exercise

Regular exercise can help keep you healthy as you deal with amyloidosis. Exercise can help reduce your risk of developing other health conditions, lower your risk of dealing with anxiety or depression, and help you sleep better.

Exercise may be difficult for you, depending on your type of amyloidosis and the location of abnormal protein deposits. Certain types of amyloidosis — cardiac amyloidosis, in particular — may make exercise difficult. Talk to your doctor before you begin any new exercise routines or programs.

There is some evidence that exercise may prevent the body from depositing amyloid proteins in the brain, which is the basis of Alzheimer’s disease. However, other studies do not find this conclusion to be true, and there’s no evidence that exercise prevents amyloid deposits elsewhere.

Stress Management

Research shows evidence that stress changes the way amyloid proteins act and are deposited. Based on this suggestion, try to focus on lowering your stress levels after a diagnosis of amyloidosis. Many people diagnosed with amyloidosis report struggling with depression or anxiety, both of which can be made worse by stress.

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

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

Smoking

Preliminary research indicates that smoking may have effects on amyloid proteins that make them abnormal and harmful to the body. Smoking is also associated with numerous health conditions, such as heart disease and lung disease. If you smoke, quitting as soon as possible can help you stay healthy and feel better overall.

How To Talk About Amyloidosis With Others

It may be difficult for those with amyloidosis to discuss their condition with others. It can help to have some ideas on hand if you are unsure how to approach discussing your condition with friends, family members, and coworkers.

Talking To Family and Friends

It can be hard to know how to talk about amyloidosis with the people you love the most. They may not understand what you’re going through, or your struggles may be so difficult for them that they don’t know how to respond.

Here are some ways to talk about amyloidosis with people you are close to:

  • Provide some concise examples of how amyloidosis affects you. Try to avoid complicated and lengthy explanations that may be hard for others to comprehend.
  • Let others know when you are experiencing pain or fatigue.
  • Be open about what kind of help you might need, even with simple daily tasks.
  • Keep your loved ones and friends informed about your treatments and how they might be affecting you. You may want to share a list of medications with those closest to you in case of an emergency.

Talking To Co-workers

You may want to be more discreet with co-workers about your condition. You have a right to medical privacy at work. Here are some tips for talking about your condition at the workplace:

  • You may want to share information about your condition with co-workers you trust. They may be able to provide support when needed.
  • Discuss your condition with a human resources administrator if you need special accommodations or modifications. Businesses with more than 15 employees are required to provide reasonable accommodations for health conditions as part of the Americans with Disabilities Act. Prepare a list of points and questions so you can be sure to cover your concerns.
  • Ask your doctor for an explanation of how accommodations might help you, and share that information with your human resources manager.

Family Life With Amyloidosis

Family dynamics can change when someone has amyloidosis. 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 well understood by the family member with amyloidosis and by the family members providing extra support.

Parenting With Amyloidosis

Being a parent diagnosed with amyloidosis can present unique hurdles. In general, make sure you:

  • Accept your condition and the necessity of explaining it to your child in an age-appropriate way
  • Ask for help when you need it in order to parent well
  • Answer your children’s questions or find someone who can give them the answers they need

Working With Amyloidosis

If you can work but need special accommodations, talk to your human resources department. Most likely, the accommodations you need will be based on the type of amyloidosis you have and the location of protein buildup in the body. For instance, some people with amyloidosis experience carpal tunnel syndrome (pain in the wrists) that can make typing on a standard keyboard painful.

Have your doctor document the way amyloidosis affects you so you can get the help at work that you need.

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.

Paying for Medication and Treatment

Although the treatment that you choose will be specific to the type of amyloidosis you’re diagnosed with, the severity of the condition, and other factors, the costs of many amyloidosis treatments are high.

Amyloidosis treatment will be much more affordable if you have some form of public or private health insurance, such as:

If you do not have health insurance, or if you have insurance but need further support, you may find resources within your state to help cover the costs of medications. Some of the programs available include:

Talk with a Medicare advisor or social worker about programs you may be eligible for that can help offset the costs of amyloidosis treatments. You can also talk to your doctor about participating in a clinical trial for amyloidosis, which will allow you to access newly developed treatments at no cost.

Traveling With Amyloidosis

Depending on how amyloidosis affects you, you may need to modify travel plans or methods so that you can take trips without making the condition worse or triggering pain or other side effects.

Talk to your health care team if you are planning to travel so your trip won’t interrupt your treatment plan. Carefully assess what medications or supplies you will need for traveling, and organize essentials well in advance of your departure date.

Talk With Others Who Understand

MyAmyloidosisTeam is the social network for people with amyloidosis. Here, members from all over the world come together to ask questions, give advice, and share their stories with others who understand life with amyloidosis.

Do you have questions or tips about living with amyloidosis? Share your experience in the comments below, or start a conversation at MyAmyloidosisTeam today.

References
  1. Amyloidosis — Mayo Clinic
  2. Amyloidosis — Cedars-Sinai
  3. Amyloidosis Information — Mount Sinai
  4. Benefits of Physical Activity — Centers for Disease Control and Prevention
  5. Voluntary Exercise Decreases Amyloid Load in a Transgenic Model of Alzheimer's Disease — The Journal of Neuroscience
  6. Effect of Aerobic Exercise on Amyloid Accumulation in Preclinical Alzheimer’s: A 1-Year Randomized Controlled Trial — PLoS One
  7. Acute Stress Increases Interstitial Fluid Amyloid-β Via Corticotropin-Releasing Factor and Neuronal Activity — Proceedings of the National Academy of Sciences of the United States of America
  8. Depression and Anxiety in Patients With AL Amyloidosis as Assessed by the SF-36 Questionnaire: Experience in 1226 Patients — Amyloid: The International Journal of Experimental and Clinical Investigation
  9. Smoking Exacerbates Amyloid Pathology in a Mouse Model of Alzheimer's Disease — Nature Communications
  10. Health Effects of Cigarette Smoking — Centers for Disease Control and Prevention
  11. Talking About Your Condition — National Health Service of Scotland
  12. Small Employers and Reasonable Accommodations — U.S. Equal Employment Opportunity Commission
  13. Chronic Illness — American Association for Marriage and Family Therapy
  14. What You Need To Know About Parenting With a Serious Illness — Parenthetical
  15. How You Qualify — Social Security Administration
  16. Medicare — Medicare.gov
  17. Medicaid — Medicaid.gov
  18. About VA Health Benefits — Veterans Affairs
  19. Get 2022 Health Coverage — Healthcare.gov
  20. Medicare Savings Programs — Medicare.gov
  21. Find Your Level of Extra Help — Medicare.gov
  22. State Pharmaceutical Assistance Programs — Medicaid.gov
  23. Patient Access Network — Patient Access Network Foundation
  24. HealthWell Foundation
All updates must be accompanied by text or a picture.
Mark Levin, M.D. is a hematology and oncology specialist with over 37 years of experience in internal medicine. Review provided by VeriMed Healthcare Network. Learn more about him here.
Sarah Winfrey is a writer at MyHealthTeam. Learn more about her here.

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