Estimated reading time: 5 minutes
Medically reviewed and verified by Kate Burke, MD, MHA
Amyloidosis is a group of diseases that happen when certain proteins in the body change shape, clump together, and form amyloid deposits. These build up in organs and tissues, making them stiff and damaging them over time. Different types of amyloidosis affect different organs, and their impact on life expectancy can vary. Many people with the condition may wonder what their life expectancy is after being diagnosed. This depends heavily on the type of amyloidosis you have, and the treatment you receive. Here, PatientsLikeMe will explain what you as a patient or a caregiver should know.
What is Life Expectancy?
Life expectancy is used to describe the average number of years a person is expected to live. It is based on several factors, including genetics, health history, lifestyle, and environment. For people with amyloidosis, life expectancy can be influenced by the type of amyloidosis they have, how early it's diagnosed, and how closely they stick to their treatment plan.
Types of Amyloidosis and Their Impact on Life Expectancy
There are several types of amyloidosis, and each affects life expectancy differently.
AL Amyloidosis
AL amyloidosis is the most common type in the U.S. It occurs when abnormal plasma cells in the bone marrow produce light-chain proteins that misfold and form amyloid fibrils. These fibrils can deposit in the heart, kidneys, liver, and other organs. Without treatment, life expectancy for AL amyloidosis can be as short as six months. However, with early diagnosis and proper treatment, life expectancy can extend to several years, with some patients living 8 to 10 years after their diagnosis.
ATTR Amyloidosis
ATTR amyloidosis involves a protein called transthyretin (TTR), produced in the liver. There are two main forms: hereditary (caused by a gene mutation) and wild-type (happening without a known genetic cause). They often affect the heart and nerves. The life expectancy for hereditary ATTR can vary depending on the mutation. On average, people with hereditary ATTR live 7 to 12 years after their diagnosis. Wild-type on the other hand generally has a shorter life expectancy, averaging about 4 to 5 years after diagnosis. It typically develops later in life, often after age 70.
AA Amyloidosis
Chronic inflammatory diseases, such as rheumatoid arthritis or inflammatory bowel disease, cause AA amyloidosis. This type commonly affects the kidneys. With effective treatment of the underlying inflammatory condition, life expectancy can be improved. It depends heavily on how much damage has been done to the kidneys. The average survival range is 2-3 years.
How New Treatments Are Improving Life Expectancy
In recent years, advances in treatment have significantly improved the outlook for people with amyloidosis. Here are some of the ways that new treatments are making a difference.
- Chemotherapy for AL Amyloidosis: Chemotherapy helps to target the abnormal plasma cells that produce the amyloid fibrils. This treatment can slow or even stop the progression of the disease, allowing patients to live longer.
- TTR Stabilizers for ATTR Amyloidosis: Medications like tafamidis help stabilize the TTR protein. This can stop it from misfolding and forming amyloid fibrils. These drugs can slow the progression of the disease and extend life expectancy.
- Gene-Silencing Therapies: For hereditary forms of amyloidosis, gene-silencing therapies like patisiran, inotersen, and Vutrisiran can lower the production of abnormal proteins. These treatments are shown to improve quality of life and increase survival rates.
- Organ Transplants: In some cases, organ transplants, such as liver transplants for ATTR amyloidosis, are the best approach. These can remove the reason behind the abnormal protein production and extend life expectancy.
The Importance of Early Diagnosis and Treatment
Early diagnosis is crucial! The sooner doctors can find amyloidosis, the earlier treatment can begin. Regular check-ups, monitoring your symptoms, and adhering to treatment plans will help you manage the disease and prolong life. You should work closely with your healthcare team to manage the condition, adjust treatments as needed, and address any complications that arise. Lifestyle changes, such as maintaining a healthy diet, exercising, and avoiding smoking, can also contribute to better health and longer life.
Amyloidosis is complex and can have a significant impact on your life. However, with advances in treatment and early diagnosis, many people with amyloidosis are living longer, healthier lives. Understanding your type of amyloidosis, following your treatment plan, and staying proactive in your care can help you beat the odds and enjoy a better quality of life!
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