Amyloid is an abnormal protein generated by cells in the bone marrow. This protein deposits in various organs such as the kidneys, liver, heart, nerves and GI tract thereby causing organ failure. It can also affect certain clotting factors in the blood stream leading to bleeding issues. Amyloidosis can occur as a primary disease or a secondary disease related to other conditions such as cancer. Treatment involves stopping the disposition of this protein with chemo and stem cell transplant while dealing with issues of organ failure. Treatment is expensive and time intensive. Many doctors are not familiar with this condition. The disease often goes undiagnosed or misdiagnosed completely leading to poor outcomes. There are only a few centers in the country who deal with this disease. Boston University is likely the most prominent along with the Mayo Clinic. Most recently Vanderbilt University has started a treatment team as well. It is not unusual for patients to have to travel away from home to get the treatment they need.
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