Amyloidosis
At TwelveStone Health Partners, we understand that an amyloidosis diagnosis can feel overwhelming and uncertain. Our dedicated team is here to guide you through every step of your treatment journey with compassionate, specialized care tailored to your unique needs.You don’t have to navigate this path alone—we’re committed to helping you manage your condition and live life more fully.
Amyloidosis Medications
What Is Amyloidosis?
Amyloidosis is a rare condition that occurs when abnormal proteins called amyloids build up in your organs and tissues. These misfolded proteins can accumulate in the heart, kidneys, liver, nervous system, and other vital organs, gradually interfering with normal function.
Types of Amyloidosis (AL, ATTR, AA, Hereditary, Localized)
There are five types of amyloidosis:
- AL amyloidosis involves antibody light chains produced by bone marrow plasma cells.
- ATTR amyloidosis results from transthyretin protein misfolding and can be either wild-type or hereditary.
- AA amyloidosis develops secondary to chronic inflammatory conditions.
- Hereditary amyloidosis stems from genetic mutations passed through families.
- Localized amyloidosis affects only one organ or area rather than spreading throughout the body.
Amyloidosis vs Other Chronic Conditions
Amyloidosis symptoms often mimic other chronic conditions, which can delay diagnosis. Unlike diseases affecting single organs, amyloidosis can impact multiple body systems simultaneously, requiring a comprehensive care approach that addresses your whole health picture.
Amyloidosis Symptoms
Recognizing amyloidosis symptoms early can make a significant difference in your treatment outcomes. Symptoms vary depending on which organs are affected:
Causes and Risk Factors of Amyloidosis
Understanding what causes amyloidosis and recognizing your personal risk factors empowers you to have informed conversations with your healthcare team and seek timely care.
Genetic and Protein-Related Factors
Amyloidosis develops when proteins in your body misfold and clump together. In hereditary forms, genetic mutations cause the liver to produce abnormal transthyretin proteins. These mutations can be passed from parent to child, making family history an important consideration.
Medical and Environmental Risk Factors
Certain conditions increase your risk of developing amyloidosis. Chronic infections, inflammatory diseases like rheumatoid arthritis, and long-term dialysis can trigger AA amyloidosis. Plasma cell disorders, including multiple myeloma, are closely linked to AL amyloidosis.
Risk Factors for Cardiac and Hereditary Amyloidosis
Cardiac amyloidosis occurs more frequently in men over 60, particularly African American men who carry specific TTR gene mutations. Wild-type ATTR amyloidosis primarily affects older adults and is increasingly recognized as an underdiagnosed cause of heart failure.
How Is Amyloidosis Diagnosed?
Diagnosing amyloidosis typically involves multiple tests to confirm the presence of amyloid deposits and identify the specific type. Your healthcare team may perform blood and urine tests to detect abnormal proteins. Tissue biopsies, often from abdominal fat or bone marrow, can reveal amyloid deposits. Imaging studies, including echocardiograms and nuclear imaging scans, help assess organ involvement. Genetic testing determines whether you have hereditary amyloidosis.
Amyloidosis Prevention and Management
While you can’t always prevent amyloidosis, proactive management strategies can help protect your organs and maintain your quality of life.
Currently, there’s no way to prevent most forms of amyloidosis. However, managing underlying conditions like chronic infections and inflammatory diseases may reduce your risk of developing AA amyloidosis.
Working closely with your healthcare team allows for careful monitoring of organ function. Maintaining a heart-healthy diet, staying physically active within your limits, and attending regular follow-up appointments support your overall well-being.
When amyloidosis affects the heart or kidneys, additional treatments may be necessary. Your care team will coordinate medications to manage fluid retention, heart rhythm, and blood pressure while protecting organ function.
Amyloidosis Treatments We Offer
TwelveStone Health Partners provides specialized infusion therapies for hereditary ATTR amyloidosis, including Amvuttra and Onpattro. These innovative treatments work by reducing the production of misfolded transthyretin protein, helping slow disease progression. Our experienced team delivers these therapies in comfortable settings while providing the personalized attention you deserve.
Organizational Resources
The Amyloidosis Foundation is a non-profit organization that supports patients and families, promotes research, education, and the awareness of amyloidosis.
The Amyloidosis Research Consortium (ARC) is a nonprofit organization dedicated to driving advances in the awareness, science, and treatment of amyloid diseases.
The Amyloidosis Alliance supports the fight against amyloidosis worldwide and encourages other countries in initiating patient organizations.
New Patient Resources
Ready to Take the Next Step in Your Amyloidosis Care?
You’ve been searching for answers and support—let us be your partner in this journey.
Contact TwelveStone Health Partners today to learn how our specialized amyloidosis treatments can help you live more fully.
