Vent Aloud: Our ATT-ARRRRR!! Sessions

Living with ATTR amyloidosis is frustrating. We hear you, we see you, and we understand. But what makes it so hard?

Is it the long road to a diagnosis? Is it the symptoms others can't see, or the comments from people who just don't get it? Is it how ATTR can touch so many parts of life, from your heart to your feet to your stomach? Is it how it affects our relationships with friends, family, and partners? Or is it the health professionals who didn't connect the dots?

What are vent sessions?

What if it's all of the above? ATTR amyloidosis is frustrating. And a vent session here or there never hurt anyone. That's why we've created a series we're calling "Vent Sessions." It's a chance for the community to vent about feeling misunderstood, living with symptoms, and the impact on relationships. Caregivers, this space is yours too.

When have you felt misunderstood because of ATTR amyloidosis?

Many ATTR symptoms are invisible. Fatigue, nerve pain, and shortness of breath don't always show on the outside. People may tell you that you look fine or that you just need more rest. It's no wonder so many of us feel dismissed, or like we have to prove we're sick.

Maybe you've heard "but you look so good," or something else entirely. What do you wish people understood about ATTR?

How have ATTR symptoms worn you down?

ATTR amyloidosis can affect the nerves, heart, digestive system, and more – sometimes all at once. Numb or painful feet, a pounding heart, stomach trouble, and bone-deep tiredness can make everyday tasks feel huge. What you could do last month might not be possible this month. It can all feel like a lot.

Maybe you've dealt with this and more. Which symptoms frustrate you most, and how do they affect your day?

How has ATTR amyloidosis affected your relationships?

Whether it's canceling plans, feeling misunderstood by those closest to us, or having hard conversations about genetic testing, ATTR reaches far beyond us. Loved ones may feel frustrated when we can't keep up.

What support have you received that's been truly helpful?

How are you handling treatment?

The people who really should "get it," outside of others living with ATTR, are our healthcare professionals. But that's not always the case. ATTR is rare, and many people see several doctors before getting a diagnosis. Even after diagnosis, some providers may not know much about the condition. It's okay to feel disappointed or aggravated by doctors.

What's your relationship to your care team like?

This is a safe space to vent, vent, and vent some more. We hear you, we see you, and we understand.