We invite members of the NZ AL Amyloidosis Support Group to submit their stories is they would like to share their stories to educate and help others.
Here are stories that we have so far:
Below is a template for you to follow in writing your story about your journey with AL amyloidosis. We think this collecting patient stories is a much-needed initiative, especially given how often AL amyloidosis is diagnosed too late due to its rarity and non-specific symptoms. We hope that this structured patient story template can help readers—patients, caregivers, and clinicians—understand the real-world experience, increase awareness, and ultimately support earlier diagnosis and more empathetic care.
Here’s a patient story template structure tailored to AL amyloidosis, suggested in an interaction with ChatGPT.
1. Title
A short, engaging headline that gives a hint of the journey or main theme (e.g., “From Swelling to Diagnosis: My Unexpected Battle with Amyloidosis”)
2. Introduction (Who I Am)
First name (or pseudonym if privacy is preferred), age at diagnosis, location (optional)
Brief summary of life before symptoms (e.g., work, hobbies, general health)
3. First Signs and Early Symptoms
What symptoms first appeared?
When did you notice something was wrong?
How long did it take before seeking medical help?
What were you (or your doctor) told the symptoms were initially?
4. The Diagnostic Journey
Number and types of doctors seen
Tests or misdiagnoses along the way
Key moments: What helped move things closer to diagnosis?
How long from first symptoms to confirmed AL diagnosis?
5. Living With Amyloidosis
Organs involved (e.g., kidneys, heart, GI, nerves)
Symptoms experienced and how they impacted daily life
Emotional impact (shock, fear, grief, resilience)
What support systems (family, groups, clinicians) helped?
6. Treatment Experience
Treatments received (e.g., chemotherapy, stem cell transplant, clinical trials)
Side effects and how they were managed
Access to care: Were there delays, difficulties, or learnings?
7. Lessons and Insights
What do you wish you or your doctor had known earlier?
What would you say to newly diagnosed patients?
What advice do you have for doctors encountering puzzling, unexplained multi-organ symptoms?
8. Reflections and Where I Am Now
Current condition (remission, stable, ongoing treatment, etc.)
What gives you hope or purpose today?
Role of connection: Support groups, sharing your story
9. Photos or Illustrations (optional)
Portrait (if comfortable), photos of life before/after, or symbolic images
10. Callout Box (for summary readers)
Year diagnosed:
Organs involved:
Time to diagnosis:
Treatment received:
One thing I want doctors to know:
One thing I want patients to remember:
Use clear, accessible language, avoiding jargon where possible.
Give contributors the option to remain anonymous or use initials.
Consider adding a medical review panel to briefly verify or add clarifying notes (e.g., symptoms align with typical renal AL).