Taking the next steps after diagnosis

When diagnosed with hereditary ATTR (hATTR) amyloidosis, it’s important to know that you’re not alone. Along with various resources, your friends, family, and doctors are available to help you manage your diagnosis.

RICK, living with hATTR amyloidosis, and LYNN, his spouse and caregiver
RICK, living with hATTR amyloidosis, and LYNN, his spouse and caregiver

"Lynn has been such an important part of my life, before hATTR amyloidosis and since. My wife was relentless in helping me get everything worked out. She’s my biggest advocate."

RICK, living with hATTR amyloidosis, and LYNN, his spouse and caregiver

Build your support system

After diagnosis, there may be times that you need help from loved ones. The following steps can help you create a support network:

Discussing your diagnosis of hATTR amyloidosis with your family can help them better understand what you’re going through, making it easier for them to find opportunities to help you in your everyday life, and helping them to know more about their own health.

Help your caregiver help you

A caregiver is someone who helps you manage the symptoms and effects of hATTR amyloidosis. While this can require lifestyle changes and adjustments, there are resources and information available for them.

Find a support group

Support groups can provide invaluable insight into life after diagnosis and to better understand the disease. By meeting other patients and hearing their experiences, you can learn tips for managing daily activities, talking with doctors, and fostering positive change.

Search for a group near you:

Amyloidosis Foundation »

Amyloidosis Research Consortium »

Amyloidosis Support Groups »

Manage your stress

After being diagnosed with hATTR amyloidosis, it’s important to work with your caregiver and doctor to manage stress you may experience. There are many different techniques for managing stress, including:

  • Talking with loved ones
  • Light activity
  • Reading
  • Participating in hobbies

Discuss options with your doctor

Talk with your doctor about any concerns or additional symptoms you might be experiencing, and to understand their recommended course of action.

Find a doctor

Our hATTR Amyloidosis Physician Directory can help you find a doctor experienced in managing patients with hATTR amyloidosis.