Helping Connect the Dots: A Caregiver’s Guide to ATTR Amyloidosis

Getting to a complicated diagnosis, like that of ATTR amyloidosis, can be a long and frustrating journey for patients and the family members who care for them. Symptoms may appear unrelated, affect different parts of the body, or resemble more common conditions—such as heart failure, hypertrophic cardiomyopathy, carpal tunnel syndrome, spinal stenosis, or peripheral neuropathy—making it difficult to recognize that they may be connected. Caregivers describe years of misdiagnoses, visits with multiple specialists, missed warning signs, and the challenge of finding healthcare professionals familiar with ATTR.

This webinar helps family caregivers better understand why getting a diagnosis can be so challenging and what they can do to help move the diagnostic process forward. Drawing on the experiences of caregivers who have navigated this journey themselves, the discussion explores the importance of recognizing patterns across seemingly unrelated symptoms, communicating effectively with healthcare providers, keeping track of changes over time, and advocating for further evaluation when something doesn’t seem right.

What You Will Learn

  • Why ATTR can be so difficult to recognize and diagnose, including how its symptoms can affect multiple systems in the body and may initially appear unrelated.

  • Why misdiagnosis and delays can happen, including the lack of familiarity with ATTR among healthcare providers and the challenges of connecting symptoms to a single underlying condition.
  • Potential warning signs and patterns to discuss with a healthcare provider, including symptoms that caregivers may not realize could be connected to ATTR, such as bilateral carpal tunnel syndrome.
  • How to become a stronger partner and advocate in the diagnostic process, from documenting symptoms and changes to asking questions and seeking additional expertise when appropriate.
  • The importance of finding knowledgeable specialists, particularly when ATTR is not well understood by the providers a family initially encounters.
  • How to navigate the uncertainty of a prolonged diagnosis, including the fear and frustration that can come with not knowing what is happening or what to expect.
  • Where caregivers can find information and support, including peer communities, disease organizations, and others who have experienced the diagnostic journey themselves, as well as Caregiver Action Network’s new resource Caring Through Amyloidosis (ATTR): A Guide for Families.
  • How education can empower caregivers, helping them move from feeling overwhelmed by uncertainty to becoming informed advocates for their loved one.
  • How to advocate for your loved one without feeling like you’re challenging the doctor.

Why ATTR Is Difficult to Diagnose

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  • The symptoms can look like common conditions. ATTR can affect multiple parts of the body, making the connection between symptoms difficult to recognize. Also, different symptoms may be treated by different specialists without anyone seeing the bigger picture.
  • The “many symptoms, many specialists” problem. Patients may see cardiologists, neurologists, orthopedists, and other specialists. Each provider may focus on the symptom or organ system in front of them rather than considering a systemic disease.
  • There is a knowledge gap among healthcare providers. ATTR is rare and unfamiliar to many healthcare professionals. Caregivers may find themselves educating their loved one’s providers about the disease.

Meet the Hosts

Deborah Stamps

Deborah Stamps, EdD, MBA, MS, RN, GNP, NE-BC, CDE®, FADLN,FAAN  | Chief Executive Officer for Deborah Stamps Consulting, LLC

Deborah Stamps is an accomplished, highly skilled nurse executive who has dedicated her career to the service of others. For more than three decades, she worked with Rochester Regional Health in Rochester, New York. Deborah is passionate about health equity, eliminating health care disparities, and increasing the diversity of the nursing workforce – she is an active participant in many local, regional and national initiatives and committees working to impact poverty, Health Equity, Racism, and workforce development.

Mike Lane

Mike Lane | Founder Amyloidosis Army

Amyloidosis Awareness Advocate. Founder Amyloidosis Army, National Director at A.C.C.B.F, ARC Patient Advisory Committee, RARE Advisory Committee, Lead Patient Senator Kansas for Patients Rising Now. Visit Amyloidosisarmy.org.

Jennifer Greenman

Jennifer Greenman  |  Clinical Care and Education Manager, Amyloidosis Research Consortium

Jennifer Greenman is the Clinical Care and Education Manager with Amyloidosis Research Consortium. As a licensed clinical social worker, Jenni works closely with patients and families living with amyloidosis, connecting them with education, emotional support, peer support, and resources throughout their disease journey.

Amera Bilal

Amera Bilal  |  Vice President of Programs & Policy, Caregiver Action Network

With over 20 years of experience designing programs at the intersection of aging, caregiving, and equity, Amera brings a powerful vision for centering caregiver voices in systems change. From leading Alzheimer’s initiatives in Prince George’s County to championing inclusive program design for historically marginalized communities, her leadership strengthens our ability to serve caregivers nationwide.

Made possible with support from Alnylam Pharmaceuticals.

Alnylam Pharmaceuticals

About Alnylam:

Alnylam is a leading independent biopharmaceutical company focused on researching and developing innovative medicines for people living with both rare and prevalent diseases. Through its pioneering work in RNA interference (RNAi), Alnylam’s approach is designed to address the underlying causes of disease. The company is committed to supporting patients, families, and communities through scientific innovation and continued investment in research.

About Caregiver Action Network (CAN):

Caregiver Action Network (CAN) is the nation’s leading nonprofit dedicated to improving the quality of life for the more than 63 million family caregivers across the nation. From parents of children with complex health needs to spouses, friends, and adult children caring for loved ones with chronic conditions, disabilities, or Alzheimer’s, CAN supports the full spectrum of caregiving families. Through free education, peer support, and resources, CAN empowers caregivers nationwide to provide care with strength, resilience, and hope.