I have AL Amyloidosis - I wrote a long post, and it's on Substack - it’s called “A Year Like No Other” - 365 Days living with an incurable, rare illness and coping with my mortality.
You don’t have to subscribe, just hit “No Thanks” and you’ll see the article.
Here’s a few paragraphs -
“If someone had told me a year ago today, July 25th, what the next twelve months would hold, I would have said they were crazy.
This wasn’t simply the year I was diagnosed with a rare disease with no real cure.
It became the year that tested the limits of my physical endurance, exposed my deepest vulnerabilities, and revealed the true strength of my spirit.
I'm sharing this update as a journal for myself, an update for friends and family who seem busy living their own lives, a thank-you to my wife and children for supporting me in ways I never expected, and to the team of medical professionals who helped me endure all the challenges with dignity. This is also a message of resilience for others suffering from rare illnesses.”