For newly diagnosed

Being diagnosed with amyloidosis can be a scary, confusing, and anxious time. This is understandable as not many people have heard of amyloidosis before. We’re here to help you navigate the early days following a diagnosis of amyloidosis, though your first way points should be the medical professionals and doctors treating you.

Questions to ask after getting a diagnosis

  • Can you explain my pathology report (laboratory test results) to me?
  • What organs, tissues, and/or parts of my body are affected?
  • How does this type of amyloidosis usually progress? Is it possible to slow down amyloidosis? Is it curable?

Questions to ask about choosing a treatment

  • What are my treatment options?
  • Can my symptoms be controlled with medication alone?
  • What clinical trials are available for me? Where are they located, and how do I find out more about them?
  • What treatment plan do you recommend? Why?
  • What is the goal of each treatment? Is it to eliminate the underlying disease, help me feel better, or both?
  • Who will be part of my health care team, and what does each member do?
  • Who will be leading my overall treatment?

Questions to ask about managing side effects

  • What are the possible side effects of each treatment, both in the short term and the long term?
  • How will this treatment affect my daily life? Will I be able to work, exercise, and perform my usual activities?
  • Could this treatment affect my sex life? If so, how and for how long?
  • Could this treatment affect my ability to become pregnant or have children? If so, should I talk with a fertility specialist before treatment begins?
  • If I’m worried about managing the costs of care, who can help me?
  • What support services are available to me? To my family?
  • If I have questions or problems, who should I call?

Questions to ask about planning follow-up care

  • Are there any signs and symptoms I should watch for?
  • What long-term side effects or late effects are possible based on the treatment I received?
  • What follow-up tests will I need, and how often will those tests be needed?
  • How do I get a treatment summary and follow-up care plan to keep in my personal records?
  • Who will be leading my follow-up care?
  • What support services are available to me after treatment has finished? To my family?

Next chapter: get to know the team behind Amyloidosis Ireland, click here to read on →