Carrying the Weight
To everyone touched by transthyretin (ATTR) amyloidosis; through diagnosis, genetics, or love, come sit with me for a moment.
March. Spring. Renewal.
For me, March for the last six years has felt like a permanent weight. Why?
It used to mean celebrating my dad’s birthday. My birthday. A day apart. Life. Joy.
A reminder of how closely tied we always were.
Now it is for remembering loss, but it is also for facing uncertainty.
When I talk about hereditary amyloidosis V122I, I often talk about advocacy, mission, and mostly Dad.
What I avoid, or simply do not have adequate space for, is talking about what it feels like to be a carrier.
March, for me, signifies returning for my annual evaluation.
Current status: symptomatic V122I carrier, unconfirmed diagnosis. Treated with Diflunisal.
Two days of testing where I hold my breath until the end of the week to learn this year’s verdict.
Am I stable?
Has something changed?
Are my kidneys okay on Diflunisal?
Is there something subtle that we are not yet naming?
Living in the in-between is not without its challenges…
Hear the rest of the story and read the full article within the Health Union ATTR Community below.
