Amyloidosis Ireland
For newly diagnosed
Being diagnosed with amyloidosis can feel frightening and confusing. You do not have to understand everything at once.
Start with your clinical team
Amyloidosis Ireland can offer support and signposting, but your first source of medical advice should be the doctors, nurses and specialists treating you.
First steps
- Ask which type of amyloidosis you have.
- Ask which organs, nerves or tissues are affected.
- Write questions down before appointments.
- Bring someone with you if that helps you remember information.
- Keep copies of important letters, test results and treatment summaries.
Questions to bring to appointments
After diagnosis
- Can you explain my pathology report or laboratory test results?
- What organs, tissues 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?
Choosing treatment
- What are my treatment options?
- Can my symptoms be controlled with medication alone?
- What clinical trials are available for me?
- What treatment plan do you recommend, and why?
- What is the goal of each treatment?
- Who will be part of my health care team?
- Who will lead my overall treatment?
Managing side effects
- What are the possible short-term and long-term side effects?
- How might treatment affect daily life, work, exercise or usual activities?
- Could treatment affect my sex life, fertility or ability to have children?
- If I am worried about costs of care, who can help?
- What support services are available to me and my family?
- If I have questions or problems, who should I call?
Follow-up care
- Are there signs or symptoms I should watch for?
- What long-term or late effects are possible?
- What follow-up tests will I need, and how often?
- How do I get a treatment summary and follow-up care plan?
- Who will lead my follow-up care?
- What support services are available after treatment has finished?