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Since Amyloidosis is an under-recognized disease, many times patients will be very sick by the time the correct diagnosis is made. It is not uncommon that a person with amyloidosis will need a heart, or kidney, or liver transplant in addition to a bone marrow transplant. Some patients may need more than one organ transplant.
We have one of the few clinics in the United States that offers multi-organ transplants to our patients with AL amyloidosis. We have a group of dedicated physicians, nurses and other health-care professionals who provide complete care to our patients.
Learn about one person's story and experience with amyloidosis.
How do we get Amyloidosis?
There are several major types of this disease.
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Immunoglobulin type-AL (L for light chain) which comes from abnormal cells in the bone marrow which form the miss-shaped proteins. This is the most common in the United States causing 5-13 new cases per million people per year. This can be treated with a bone marrow transplant or medical treatment.
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Inflammation type-AA (A for associated with inflammation) which comes from miss-shaped proteins which originate from the liver. This is the most common type world-wide. Diseases like rheumatoid arthritis,
tuberculosis and familial Mediterranean fever can cause AA. This can be treated by treating the associated
disease that is causing the AA.
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Hereditary-ATTR which runs in families as an autosomal dominant trait and is caused by an abnormal liver
protein. This can be treated by a liver transplant.
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ABeta2Miroglobulin-dialysis associated which is seen in patients on long-term dialysis. This can be treated with a kidney transplant.
When should my doctor consider that I might have Amyloidosis?
- Do you have large amounts of protein in your urine with or without chronic kidney disease?
- Do you have congestive heart failure (CHF)?
- Do you get short of breath with mild exertion?
- Do you have a large liver without a known cause?
- Do you have problems with the nerves in your hands (carpel tunnel syndrome) or your feet without a known cause?
- Do you have unexplained or unintentional weight loss?
- Do you have easy bruising?
- Do you have bruising around your eyes?
- Do you have swelling in your legs without a known cause?
- Do you pass out or get dizzy easily when you stand up?
- Are you generally weak or tired without a good reason?
- Do you feel your tongue has grown in size?
- Do you suddenly bite your tongue?
- Do you have sleep apnea but are thin?
