Tag Archives: patient story

Just spending time [at the Patient Education Conference] with people who knew exactly what I was going through, who knew the instantaneous fear and rage that goes along with each new lesion, who were discovering how to find the shady spots at high noon, was an amazing comfort.

I had never told anyone except my close family that I had an autoimmune disease. I hid it away like a dirty secret because I was afraid of appearing weak or being treated differently. Especially as a student of medicine—we are supposed to treat patients, not be them.

Welcome to the Patient Journey Series: Story 1, Halima’s Diagnosis. “My symptoms started at the beginning of April 2018. My mouth was inflamed, and I had painful blisters on both sides that made it very difficult to eat or drink. I had no idea what was causing my symptoms, and I went to four different doctors.”

Last year was shaping up to be a very important year. I had just gotten an associate degree in journalism and was all set to transfer to a four-year university in the fall to pursue my B.A. On top of that, I turned 21 in February and was looking forward to savoring all the exciting things young adulthood had to offer. It was during this very same month that everything changed.

Sharon Williamson’s journey to a pemphigoid diagnosis started in July of 2014 when her mouth began to bleed whenever she brushed her teeth. Like many undiagnosed P/P patients, Sharon first shared her symptoms with her dentist. This dentist did not recognize Sharon’s symptoms and told her to floss more frequently.