May 3, 2026
It’s lupus awareness month.
Lupus is an autoimmune disease that affects everyone so differently. Onset can be in adulthood or childhood. Tate received this diagnosis at age 9. Many lead a very normal life with very manageable symptoms. For others, the disease can lead to kidney failure, have severe central nervous system involvement, cause joint pain and swelling, severe skin and hematologic issues, cardiac issues, cause debilitating fatigue (and lots more) and ultimately lead to an early death. Tate’s lupus has been a beast to control and has very much been treatment resistant. Her Dr calls it lupus +.
She started a new biologic a month ago that we are holding onto hope for symptom management. It’s another daily injection (IV infusion while inpatient) and is the last targeted med to try for Tate. We need this one to work. It won’t help with pain as that’s a different disease process, but we believe it’s the lupus like process that is wreaking havoc on Tate’s central nervous system and continuing to cause CNS decline.
Thinking of ALL the lupus warriors this month.