BEING YOUR LOVED ONE’S ADVOCATE

You know your loved one better than most people do—even their doctors. ATTR-CM often goes unrecognized or misdiagnosed, leading many people to live with unresolved symptoms for several years. You can play an important role in helping to ensure your loved one’s symptoms are clearly described to their doctor.

Being proactive and advocating for your loved one by asking their cardiologist questions can help you get many of the answers you need. The Doctor Discussion Guide on this website offers a checklist of ATTR-CM symptoms and other advice for discussing concerns with their healthcare providers. 

SEE THE DOCTOR DISCUSSION GUIDE 

LEARN MORE ABOUT ATTR-CM

“Because the symptoms are so varied, I do think as a caregiver, you have to participate. You have to be there. You have to show up. You have to take notes. I bring data, I bring dates. And I'm maybe a little pushy about it, but sometimes when Don is reticent, I'm there to speak up.”

​​​​​​​-Jackie, Caregiver

HOW YOU CAN HELP

  • Check in with your loved one about how they’re feeling and actively listen to their responses

SEE SOMETHING? SAY SOMETHING.

If someone you love is diagnosed with heart failure and you notice them struggling with seemingly random, unresolved health issues like:

IRREGULAR HEARTBEAT​​​​​​​

SHORTNESS OF BREATH

LOWER BACK PAIN

CARPAL TUNNEL SYNDROME

The steps you take to help them communicate with their cardiologist can help them to better manage their disease. You may even notice things that your loved one does not, which makes your observations even more important.

LEARN ABOUT ATTR-CM SYMPTOMS

LEARN ABOUT CLINICAL TESTS

“One of the things that I noticed most was the numbness in her legs and in her hands, which made it hard for her to grip certain things, and obviously with walking, it’s hard for her to know which leg she's got going forward.”

​​​​​​-Brad, Caregiver

“I had lived with Don for 54 years, and I knew about the carpal tunnel. I knew about the knee injuries and surgeries. I knew about the ankle swelling. I knew about the heart disease. So, we were just surprised when they put it all together and said it was attributed to this one thing, which was the ATTR-CM.”

-Jackie, Caregiver

HOW YOU CAN HELP

  • Attend doctors’ appointments with your loved one and contribute by discussing symptoms you’ve noticed, taking notes, asking questions, and communicating worries your loved one may have expressed to you
  • You can see a list of what to bring to doctors’ appointments in our Doctor Discussion Guide

LEARN FROM THOSE WHO KNOW

There is no one way to be a caregiver. The responsibilities and roles different caregivers have vary depending on the unique needs of their loved one who is living with ATTR-CM. But there are some helpful things to keep in mind as you navigate you and your loved one’s journey together. 

HEAR FROM BRAD, A CAREGIVER FOR A LOVED ONE LIVING WITH ATTR-CM.

HOW YOU CAN HELP

  • Manage medical records and appointments
  • Manage dietary needs, exercises, and other things that support your loved one’s overall health

CAREGIVER RESOURCES AND INFORMATION

Being a caregiver is a critical but difficult role to have. It’s important to have the support you need while you’re supporting your loved one. Below are some caregiver support organizations and amyloidosis advocacy groups.

Amyloidosis Support Groups

  • Provides education through support meetings, live in 30 cities
  • Provides education through virtual webinars, as well as support groups on Facebook

Amyloidosis Research Consortium

  • Provides comprehensive support and information for patients
  • Accelerates development of and access to new and innovative treatments
  • Drives research that will have the greatest impact on patients

Amyloidosis Foundation

  • Supports research for an earlier diagnosis
  • Educates medical professionals
  • Provides patients with a comprehensive range of services
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