Amyloidosis is a progressive disease in which abnormal proteins are deposited into the body’s tissues and organs. The buildup of protein causes the tissues and organs to thicken and lose function.
There are two major types of amyloidosis that can affect the heart (cardiac amyloidosis) – light chain (AL) and transthyretin (ATTR). Because it is a result of abnormal bone marrow production, AL Amyloid usually is primarily treated by oncologists. Because heart disease is often the most lethal presentation of ATTR amyloid, management is usually directed by cardiologists.
Once thought to be rare, ATTR amyloid is being more frequently recognized as cause of heart failure, particularly people of Afro-Caribbean descent. Early diagnosis and treatment are crucial to surviving CA, which typically has a poor prognosis and high rate of mortality.
At Cleveland Clinic Florida’s Heart, Vascular & Thoracic Institute, we have the expertise and experience to diagnose and treat this condition, which can often go undetected. We bring together clinicians from cardiovascular medicine, including advanced heart failure, hematology and medical oncology, transplant, and neurology. Our clinicians specialize in the diagnosis and treatment of this disease.
What We Treat
Until recently, a biopsy was the only way to confirm the presence of the disease. But the Tc-PYP scan, which was developed about 40 years ago for heart attack patients, has proven to be an even better and noninvasive diagnostic tool. The test is relatively simple, involving an injection of a radioisotope and imaging of the heart with a specialized camera.
A Multidisciplinary Approach
Amyloidosis is a multi-system, multi-organ disease. Cardiac amyloidosis (CA) often can go undetected as patients develop symptoms such as bilateral carpal tunnel, weakness, numbness, kidney failure or heart failure. Our expertise across many specialties including neurology, nephrology and cardiology, allow us to use a team approach to evaluate patients’ symptoms and determine if more advanced testing and treatment is needed.
CA is progressive, and the prognosis is poor if it is left untreated until a later stage. Traditional cardiac medications must be modified to reduce side effects and improve cardiac outcomes. More recently new medications have become available to treat cardiac and neurologic complications. Patients respond best to therapy when they are diagnosed early in their disease as these new amyloid-specific therapies can slow the progression of disease. For ATTR amyloid care is best coordinated by the cardiologist.
Our staff has more than a decade of clinical experience in the imaging, diagnosis and treatment of ATTR amyloid. We have advanced heart failure and transplant programs available as well.
ATTR -Amyloid occurs in two forms – Most patients have wild type CA – having no genetic predisposition to the disease – A smaller proportion have mutant or hereditary ATTR amyloid. Genetic testing to determine if patients have one of the 120 mutations that can cause the disease is required. Our staff can arrange for genetic testing of all patients at no cost, and if positive can arrange for family testing and genetic counselling.
Appointments & Locations
To schedule a consultation, please call 954.659.5290 (local) or 877.463.2010 (toll-free).
You can now stay connected to your healthcare team through virtual visits, using your smartphone, tablet or computer.
Why go virtual? It's an easy, convenient and secure way to see your provider face-to-face without having to leave home. This saves you travel time, parking fees and time spent in the waiting room — and you can also have a loved one or caregiver join you. If appropriate, you can also get a prescription sent to the pharmacy of your choice.
Many insurance companies cover the cost of virtual visits, so check with your insurance company ahead of time. Interested in getting started? Call your provider to find out what virtual visit options are available.
We see patients at Cleveland Clinic Florida's main campus:
Cleveland Clinic Florida
2950 Cleveland Clinic Blvd.
Weston, Florida 33331