Good News TODAY
TODAY featured our little family.
Greetings Glorious Substack Readers,
The response from the community on our family art project has continued to be greater than we could have ever imagined.
Today.com featured us in a beautiful article detailing our family’s journey. In lieu of a long post from me, just go there and read the very kind piece.
Did You Miss it?
aHUS Q&A
Hi Readers, A medical student reached out to me with questions about atypical HUS, so I made the video response below. I wrote an extensive but super accessible post about my disease here in case you missed it.
If you’re new here and wondering, “what happened to this lady?” read:
I started writing this when I was on dialysis. It’s intended to be both memoir and a practical tool to help folks who might be going through something similar or those caregivers and family supporting someone with a challenging diagnosis. NOTE: This is not intended to replace actual medical guidance. Please consult your doctors on your individual challenges and situations. Please talk to your clinicians before adjusting any of your care protocols. Also names have been changed for most of my medical staff.
Thank you to CC Couchois, Roy Lenn and Dr. Richard Burwick for your founding level donation.
awesome! You will inspire others to combat hate with loving acts!