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If you’re wondering how you can best help your loved one, you’re in the right place.
SEE THE FULL PICTURE
If you’re wondering how you can best help your loved one, you’re in the right place.
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
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
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.
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.