top of page

PATIENT STORIES & ADVOCACY

Oriental%20Lotus_edited.png

Key Concepts

This page contains first-hand accounts of what's it's like to live with Sjogren's. Learn what people with Sjogren's have done to raise community awareness.

These stories help validate your experience, advocate for yourself,  and may inspire you to spread the word about Sjogen's. 

Articles

I Have Sjogren's - Dr. Rebecca (Bexi) Lobo's account of how she discovered she had Sjogren's, what it is, and what it's like to live with it.

Dis oughta know me, uhhh?!? - Dr. Rebecca (Bexi) Lobo's account of how she discovered she had dysautonomia, what it's like to live with it, and what dysautonomia is. Dysautonomia is an often overlooked cause of fatigue, lightheadedness, "brain fog" and gastrointestinal symptoms in Sjogren's. 

 

MS-ing the Mark  - KP Kelly shows how neurological Sjogren's symptoms were repeatedly mistaken for multiple sclerosis (MS) and how this delayed her Sjogren's diagnosis. 

Getting a diagnosis during COVID article and audio story by Therese Pope, Sjogren's patient

She's Not a Princess, She Has Sjogren's-  blog post by Dr. Susan Masterson, Sjogren's patient and creator of the Autoimmune Self-Care blog. 

One side effect of being young, female and sick: People won’t believe you

Videos

I Have Sjogren's - Dr. Rebecca (Bexi) Lobo's interview with a CBS TV reporter of how she discovered she had Sjogren's, what it is, and what it's like to live with it.

Updated 02-24-2024

bottom of page