Ask Questions and Connect: Forums and Resources for Supporting a Loved One With ATTR

The forums section of ATTR-Amyloidosis.net has been a place to read conversations, start discussions, and connect with other caregivers and loved ones about ATTR. These forums also have been a place to vent, find support, and share resources.

Below is a compilation of some interesting conversations and health leader articles on supporting a loved one through diagnosis and treatment for ATTR amyloidosis. Take a look around to see what others shared, and join the conversation.

Resources for ATTR caregivers

These basic articles provide information and links to helpful resources. Some of our most viewed articles include:

• Caring for Someone With ATTR Amyloidosis
  Your loved one has been diagnosed with ATTR amyloidosis. You may feel overwhelmed. Taking small steps can help you feel more in control.
• What Is ATTR Amyloidosis?
  ATTR amyloidosis is a rare condition. Understanding the basics is the first step in supporting your loved one’s health.
• Community Views: How Does Being a Caregiver Impact Your Life?
  Read personal perspectives from caregivers supporting loved ones with a wide variety of health conditions.
• Helpful Hints for Long-Distance Caregiving
  New technologies, apps, and online health portals can be useful when tackling issues from anywhere around the world, pending your loved one’s permission.

Find support in the forums

Build awareness about ATTR

Personal stories about care

Read about personal perspectives from caregivers and those living with ATTR.

• The Quiet Way ATTR-CM Changes You, by Faye Adams

There is something incredibly powerful about being cared for in the quiet ways. The way he notices before I even have to say I’m tired. The way he adjusts plans without making it feel like a sacrifice. The way he steps in so naturally that sometimes… I don’t even feel like I need help at all.

• The Caregiver No One Names, by Erin Poyant

My mother carried the day-to-day weight and the anticipatory grief that comes with being there every day. Mine showed up differently, in moments when it was acutely needed, in crisis. Caregiving in our family did not belong to one person. It moved between us, depending on what was needed.

• My Family's Diagnosis Journey: And So, It Begins...

I cannot convey the shock of seeing him in his condition. The image will be with me forever. A shell of himself - my once vibrant, athletic brother - was a walking skeleton. It had been a year or so since I’d seen him last and I knew he’d been ill, but this was devastating for me. It was supposed to be a happy occasion.

Hear from others who get it

Make new friends

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You are not alone

Caregiving can bring you closer to your loved one and be a rewarding experience for you both — but it can also be stressful. That's why it's so important to lean on resources for ATTR caregivers and a community that understands what you're going through. As you move through diagnosis and ATTR management, know that you don't have to do it alone.