My Experience with Pemphigoid Gestationis

Ashton Brown

When I got pregnant with my first and only child in 2010, I didn’t know what I was about to go through. Of course, I had all of the normal new-mom worries, but everything changed around the 26th week. I was diagnosed with pemphigoid gestationis (PG), a rare autoimmune bullous dermatosis of pregnancy. I've been told that this form of pemphigoid is rare, even among a family of rare diseases.

My symptoms started with terrible itching on my palms and feet. I got tiny little bumps after scratching my palms, but still didn’t think anything of it. I have had sensitive skin ever since I was a child, so I assumed it was something minor. However, when I got in bed at night and my legs itched so badly that I couldn't sleep, I knew something was wrong. It felt like my skin was on fire. I would scratch and scratch and not get any relief. One night, I noticed I had little, red bumps all over my legs, and I decided to go to the emergency room since it was so late. I was told that I had scabies. They gave me a printout that explained scabies and, after reading it, I knew that wasn’t what I had. I still followed the treatment for scabies because I didn’t know how to tell a doctor they were wrong.

As expected, my skin got worse. My whole body itched now, and blisters appeared on my wrist. I was panicked and in so much pain. I went to my family doctor, and she told me that I needed to see a dermatologist as soon as possible. She tried to get me an appointment immediately, but I couldn’t be seen for two weeks. She didn’t know what I had, but she knew I couldn't wait that long. She told me to go to the emergency room in the next county over because they had an on-site dermatology office that could hopefully get me in sooner. I didn’t know what to expect.

When I arrived at the emergency room, I was seen very quickly. The first doctor immediately told me that he also had no idea what was happening to me. I started to feel discouraged. He told me that he was going to make some phone calls and he would return. It was two hours before I saw him again, but this amazing man spoke with the dermatologist, explained my symptoms, and got me a dermatology appointment for the next morning. He had been on the phone the entire time I was waiting. He stressed the importance of going to that appointment. I could never thank that doctor enough because he led me on the path to getting answers.

I showed up early to my appointment the next morning. The dermatologist immediately told me that he thought I had PG. He performed a biopsy on a blister from my arm and sent it for testing. He told me that PG is very rare and that he’d only ever seen one other case in his 12-year career. But that was how he knew exactly what I had. My OB/GYN had been in the field for 30 years, and I was his first PG case. The biopsy came back and confirmed that the dermatologist was right: I had PG.

Over the next couple of weeks, the blisters continued to spread until they covered 90 percent of my body. I couldn't sleep because I would scratch in my sleep and the blisters would open and become infected. I couldn't wear clothes because my blisters would weep, and my clothes would stick to them. When I’d take my clothes off, my skin would come off with them. I was miserable. I think anyone with similar skin issues likely knows the struggle of taking high doses of prednisone—at one point I was taking 100 mg of prednisone a day.

I was hospitalized on and off over the next two months of my pregnancy. When I was in the hospital, I was asked if it was okay for medical students to observe my skin. I always agreed because I knew that it was unlikely that they would see a PG patient again. But I wanted them to know it was a possibility. If they ever had another patient in the future with similar symptoms, I wanted them to remember me.

I had my son early at 34 weeks. I was put to sleep for the delivery—after two epidural attempts, the doctors determined that my pain receptors were blocked by my PG. Since I could feel everything and they needed to do a cesarean, that was my best option. They told me that after they delivered my son, my skin instantly changed colors. It went from red/pink to purple/tan.

My son had a few blisters on his skin when he was born, but they cleared up quickly and he wasn’t bothered by It's important to know that this condition is triggered by pregnancy, but it never really goes away. them. He's now 11 years old and as healthy as can be! A few months ago, I lost my dream job. I was more stressed than ever. I started getting a small rash on my neck, and it spread slowly every day. It was itchy and painful, and it brought back a lot of feelings I had during my pregnancy. I thought I might be pregnant again.

When I had PG in 2010, I hadn't met my husband yet, so he didn't know how bad my symptoms had been. I’ve tried to tell him about my experience with PG, but I think it’s hard to understand the severity of it unless you can physically see it. I really didn't take any photos during my pregnancy since I couldn't focus on anything other than the pain. So finally, after a decade of not seeing any photos of myself with active PG, I requested my medical records from my dermatologist. It took a few weeks for them to arrive, but when they did, I almost couldn't believe it was me in the photos. My skin looked like something from the set of The Walking Dead. When I saw the photos, I knew I had to do something to raise awareness of PG because someone out there might be feeling the same way I felt.

I started using TikTok in February 2021. (I was late to the bandwagon because I thought it was just for dancing teenagers.) I started posting funny videos and after just a couple of months, I had thousands of followers. When I received my medical records and decided to raise awareness of PG, I used TikTok as my platform. I made a video that showed a photo of my legs with PG, and it went viral. It received nearly 3 million views, though that wasn't even the best part about it. Since the video went viral, I was able to help at least three or four women get a potential PG diagnosis. I felt like I’d made a difference for those women, and that's all I wanted.

A couple of days after the video went viral, a media company reached out to me and asked if I’d be willing to let them publish my story. They published several online articles, as well as some magazine articles, mostly in the UK. It was because of these articles that I found out about the IPPF. I received a message request from a man I didn’t know on Facebook. He told me he’d read my story and that his wife had PG with their first child. He said that women in the future might not have to struggle as much because they could find me and my videos. He let me know that he wished they had been able to access a resource like my video during her pregnancy. He also told me about the IPPF’s annual Patient Education Conference, and he said they rarely have PG speakers. Knowing that I wanted to continue to help people, I reached out directly to the IPPF and asked if they needed any help. Because of that, I was able to share my story with PG at the 2021 Virtual Patient Education Conference!

Even with all of my struggles with PG, I’m one of the lucky ones, though I didn't realize this for many years. I still get flare-ups on my skin when I get my period, or if I experience elevated stress levels. I started looking for more answers, and I found a group of women on Facebook from all over the world who were experiencing the same thing. When I found this group, I felt overwhelmed with emotion because I had felt alone and like no one understood. But there’s a group of hundreds of beautiful women who know exactly how I feel! I learned that so many women were never even properly diagnosed. So many of them didn't get the option for treatment, had multiple pregnancies, and experienced PG symptoms multiple times. Feeling alone with a disease of any kind is something that no one should experience. This is why raising awareness about PG is so important. Even if there are only a couple of women each year who reach out, we can at least give them comfort in knowing that they are not alone. That is so powerful!

Pemphigoid gestationis needs to be talked about more. It's important to know that this condition is triggered by pregnancy, but it never really goes away. Women that experience PG must know: you are not alone.

For more information about PG, visit the National Institutes of Health Genetic and Rare Diseases Information Center: https://rarediseases.info.nih.gov/ diseases/6497/gestational-pemphigoid.

Ashton Brown

Ashton Brown lives in Morganfield, Kentucky, with her husband and 11-year-old son. She uses her social media platform to raise awareness about PG.