Amyloidosis (am-uh-loi-DO-sis) is a disease that occurs when substances called amyloid proteins build up in your organs. Amyloid is an abnormal protein usually produced by cells in your bone marrow that can be deposited in any tissue or organ.
Amyloidosis can affect different organs in different people, and there are different types of amyloid. Amyloidosis frequently affects the heart, kidneys, liver, spleen, nervous system and gastrointestinal tract.
Amyloidosis is rare, and the exact cause is often unknown. Treatments are available to help you manage your symptoms of amyloidosis and limit the production of amyloid protein.
Signs and symptoms of amyloidosis depend on which of your organs are affected. When signs and symptoms are evident, they may include:
When to see a doctor
Purpura around the eyes
Some people with amyloidosis experience purpura — a condition where small blood vessels leak into the skin, causing purplish patches. ...
An enlarged tongue (macroglossia) can be a sign of amyloidosis. ...
Doctors classify amyloidosis into three major forms:
Anyone can develop primary amyloidosis, but certain factors place you at greater risk:
The severity of amyloidosis depends on which organs the amyloid deposits affect. Potentially life-threatening situations include kidney failure and congestive heart failure:
Preparing for your appointment
The signs and symptoms of amyloidosis are often vague and mimic those of other conditions, so it can be difficult to diagnose amyloidosis. Your symptoms may first prompt you to see your family doctor or a general practitioner. However, you may then be referred to a doctor who specializes in blood disorders (hematologist).
Here's some information to help you get ready for your appointment, and what you might expect from your doctor.
What you can do
Your time with your doctor is limited, so preparing a list of questions can help you make the most of your time together. List your questions from most important to least important in case time runs out. For amyloidosis, some basic questions to ask your doctor include:
In addition, don't hesitate to ask questions during your appointment at any time that you don't understand something.
What to expect from your doctor
Tests and diagnosis
In order to rule out other conditions, your doctor may start by conducting:
If blood or urine tests detect an abnormal protein — which could indicate amyloidosis — your doctor may order a tissue biopsy to make a definitive diagnosis.
Biopsy may involve several samples
Occasionally, tissue samples may be taken from other parts of your body, such as your heart, liver or kidney, to help diagnose the specific organ affected by amyloidosis. These procedures may require hospitalization.
Treatments and drugs
Though there's no cure for amyloidosis, treatment may help manage signs and symptoms and limit further production of amyloid protein.
Treating primary systemic amyloidosis
Treating secondary amyloidosis
Treating hereditary amyloidosis
For example, if amyloidosis affects your heart or kidneys, you may be asked to follow a low-salt diet to control fluid retention. Or your doctor may prescribe diuretics and other medications. In some cases, your doctor might prescribe medication for pain control.
If any of your organs are severely damaged from amyloid deposits, you may need an organ transplant. Although such a transplant won't cure you because amyloid deposits could potentially collect in the new organ as well, a transplant could prolong your life.
Lifestyle and home remedies
Coping and support
When faced with a serious chronic illness, such as amyloidosis, many people turn to family and friends. However, others may find support and encouragement from groups that share the same illness. Ask your doctor about local support groups, or contact Amyloidosis Support Groups toll-free at 866-404-7539 or through its website.
Last Updated: 2011-08-06
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