I have just been diagnosed with amyloidosis. What should I do?

Amyloidosis is so uncommon many physicians are not up to date on the latest treatments. We recommend you be referred to a facility that has experience with amyloidosis for an evaluation. The doctors that are most expert in this condition in the USA are:

  • Boston University Amyloid Treatment Program
  • Memorial Sloan-Kettering in New York City
  • The Mayo Clinic in Rochester Minnesota, Jacksonville FL and Scottsdale AZ.
  • Tufts Medical Center in Boston, MA

In the last five years or so, many doctors who trained with amyloid specialists have transferred around the country taking their expertise with them. The foundation keeps an up to date listing of doctors throughout the country who treat amyloidosis patients. In Europe:

  • The Royal Free Hospital near London
  • University di Pavia Hospital in Italy
  • Groningen University Hospital in the Netherlands

These institutions have established amyloidosis practices. Contact details are on this web site under MEDICAL HELP. Once the evaluation is complete and the amyloidosis is confirmed and properly "typed", a reliable treatment plan can be put into place. Some questions you want to ask are:

  • What stage is my disease and which organs are involved?
  • How soon do I need to be treated?
  • What are my treatment choices?
  • What are the expected benefits of each kind of treatment?
  • What are the risks of each treatment?
  • What are the side effects of each treatment?
  • Are there new treatments or clinical trials that I should consider?
  • What are my chances of being cured or achieving remission?
  • How will we know if treatment is working?
  • How will each treatment affect my daily life?
  • What are the chances of the disease coming back again?
  • Do other centers offer therapies not available locally?