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 just started on Wainua treatment anyone on this medication
It took four years for one of my doctors to realize I might have ATTR-CM, thus treatment was delayed. Many people have ATTR, but it is not being diagnosed for a couple of reasons. Doctors do not spend enough time with patients to do the inquiry needed to diagnose complicated maladies like ATTR-CM. Further, what is known about ATTR-CM is not being communicated or discussed widely enough. The only doctors who treat me who know about it are those I’ve taken the trouble to educate. Conclusion: research is fantastic. Delivery sucks.
, I 'd agree with that 100%. Doctors need to have the space to spend time with patients to explore when there are no easy answers, and to have curiosity about the things they don't see often. -Warmly, Donna (Team Member)
What is life expectancy after diagnosis?
, Life expectancy varies greatly based on type, and how early treatment is started. Your doctor will be able to privide an estimate based on individual circumstances. Have you or a loved one been diagnosed? - Warmly, Donna (Team Member)
Do you have any symptoms of carpal tunnel?
