'There's definitely life after pemphigus' 

Penelope Sherwood was diagnosed with pemphigus vulgaris at the age of 44. She says she couldn't have coped without the support of her family and the Pemphigus Vulgaris Network charity. Penelope now leads a full and rewarding life teaching Japanese embroidery.

"It was August 1992 and I was looking after a toddler. While giving her some peanut butter sandwiches, I had a tiny mouthful.

"As soon as I swallowed it I realised that I had a huge blood blister on my palate. I panicked. Being a dentist, I knew there could be a serious reason for this.

"I was 44 at the time. It took some months to find out what was wrong. During this time my skin itched terribly, my hair fell out and I was extraordinarily tired.

"After various hospital visits and three biopsies, the doctors told me I had pemphigus vulgaris (PV). I have mucosal PV, which means that my immune system attacks all the mucosa: my nose, mouth, oesophagus (food pipe) and vulva.

"My mouth was in a terrible state. I knew how important it was to keep my mouth clean, but this was very painful so I used mouthwashes. My husband was enormously supportive.

"Initially, I was put on an antibacterial medicine called dapsone. It made me lose all energy and it didn't work, although I know it's effective for some people.

"At that point, I knew I was going to have to take steroids. I was sent to the Royal National Orthopaedic Hospital in Middlesex to investigate my bone density, which can be affected by long-term steroid use. 

"I was put on intravenous etidronate once a week initially, then once a month. After three to five months I was given Didronel, a new treatment for weak bones. In the meantime, I was put on prednisolone (a corticosteroid) and azathioprine (to suppress my immune system).

"While I was on large doses of prednisolone, I lost a lot of muscle tone. That's improved now, although my eyesight has still not improved.

"I've been off the steroids for five years now. I'm just taking small doses of azathioprine. Every time I stop my medication, I get blisters in my mouth again.

"When I got the blisters, my diet was very bland. I couldn't eat anything sharp or crispy. The blandness and softness of the food was depressing. I ate the occasional crisp or chip, but it would touch the side of my mouth and I'd get a blister.

"Now, I rarely get blisters. I still get the occasional one if I eat raw banana or spicy foods. If I have stewed fruit, I have to balance it with cream to counter the acidity. But I can eat a lot more things than before.

"I still get tired, so I only do one thing outside the flat each day. I have a full life, as long as I limit myself.

"Before I developed pemphigus I painted, but my muscle weakness meant that I couldn't hold a paintbrush any more. A friend suggested I start painting with a needle and thread.

"I now teach Japanese embroidery. It has opened up a new life for me, which is so satisfying. In a way, I'm thankful for the pemphigus because without it I'd never have discovered the embroidery.

"I'd say this to other people with the disease: however difficult it is to control it, there's definitely life after pemphigus."

Page last reviewed: 17/11/2015

Next review due: 17/11/2017