Patient Stories

Every day, our patient services team hears stories from our community about what it’s like to live with pemphigus and pemphigoid. From getting diagnosed to finding the right doctor to thriving post-treatment, many patients express similar frustrations. And yet, there’s a common hope that runs through many of the stories we hear at the IPPF.

By sharing these stories, we hope that patients and their caregivers will find comfort in the knowledge that they are not alone. We also hope that healthcare professionals and researchers will find inspiration in these stories to continue their critical work related to pemphigus and pemphigoid.

Halima

My symptoms started at the beginning of April 2018. My mouth was inflamed, and I had painful blisters on both sides that made...

August 14, 2020Anna Lane

Rudy

My journey with pemphigus foliaceus (PF) began in 2009; however, my symptoms began in 2008. I have been in remission since 2016. It...

August 14, 2020Anna Lane

Mei Ling

I’ve been a peer health coach (PHC) with the IPPF since 2012. However, if you had told me back in early 2001 that...

August 14, 2020Anna Lane

Minatallah

When applying to dental school, my initial feelings about dentistry centered on a yearning to help others. Our prerequisite courses required us to...

August 14, 2020Anna Lane

Linda

My journey began in August, 2017. I had a slight rash on my lower back that was extremely itchy. When I went to...

August 14, 2020Anna Lane

Kathleena

When I was first diagnosed with pemphigus vulgaris (PV), I didn’t have the slightest clue what those strange words meant or how this...

February 13, 2020Anna Lane

Fred

It was January 2007, and I was sitting across the desk from the second dermatologist I had seen in five months. For the...

February 13, 2020Anna Lane

Toby

When I was diagnosed with pemphigus vulgaris (PV) in late 2010, like most patients I’d never heard of the disease. Also, like most,...

February 13, 2020Anna Lane