Have you been diagnosed with Wild-type ATTR (ATTRwt)?
What do you wish others knew? This is a place for those with ATTRwt to connect and share. Your story could be the lifeline someone needs to feel less alone today. Whether it’s a question, a tip for managing symptoms, or just a word of encouragement, your voice matters.
I had a cardiac arrest and I couldn't walk i go to a heart failure clinic and the Dr. Sent me to have a MRI because I kelp falling for no reason.
And that's b ow it was discovered I'm so confused about this know one is really telling me anything, you deserve a team that answers your questions and helps you feel confident with your treatment plan. Here are a few articles that may help:
https://attr-amyloidosis.net/living/doctor-questions
https://attr-amyloidosis.net/living/advocating-doctorhttps://attr-amyloidosis.net/living/second-opinion
https://attr-amyloidosis.net/living/coping-new-diagnosis
https://attr-amyloidosis.net/living/second-opinion
If you have any questions, please don't hesitate to let us know. We have patient leaders who have likely been where you are and can share their experience. - Warmly, Donna (Team Member)
Hattr what are my symptoms
Hi
, welcome! You can find more about the symptoms here: https://attr-amyloidosis.net/symptoms. What symptoms are you experiencing? - Warmly, Donna (Team Member)
Hi. I was diagnosed with wtATTR-CM in January 2025 after carpal tunnel surgery. I have had nuclear cardiac imaging, bloodwork done in 2025. In 2026 I had bloodwork and cardiac MRI. Fortunately no amyloid was detected in my heart.
My cardiologist told me there’s no medication approved for use unless I have amyloids in my heart. Early detection and treatment are key.
Before I retired I did cancer research and treated cancer patients. I believe in early and aggressive treatment.
When I asked my doctor why stabilizers, which would decrease the numbers of amyloid produced and decrease their numbers in a heart could not be taken by me or anyone else without cardiac involvement he said stabilizers were not approved by the FDA for this purpose.
That’s outrageous! Heart failure would be decreased and lives prolonged if stabilizers were approved for use by those of us who don’t have amyloids in our hearts.
Now I do not know if the drug manufacturers presented this prophylactic use to the FDA or not. If the manufacturers did why would the FDA not approve a life preserving medication. Approval would save so many patients and their loved ones so much suffering.
It’s torture waiting for the day my heart has disease. Or just one day dropping dead because I have to wait for the progression of this disease.
I have a 21 year old son who I adopted when I was 50 because his biological mother was giving him up. I’m a single mom. I want to be here as long as possible for my son. I must say he’s stressed out about this as am I.
So, as a community, I wonder if we could petition the FDA to approve medications for all of us who have not yet had heart failure.
I appreciate your time in reading this. I’m sorry it’s long but it’s important that we be treated not as 2nd class patients.Thank you, all, for posting about your experiences. We are hoping to hire some writers soon, and would love to talk with any of you who are interested in writing for this site - you can check out this link - https://socialhealthnetwork.com/opportunity/attr-amyloidosis-contributor, or email contact@attr-amyloidosis.net and I'll respond directly to answer any questions you have. - Liz (Team Member)
