My childhood cold sores masked rare genetic condition

Cate Wallwork

A Rochdale woman was three-years-old when her family noticed her face had dropped. She was diagnosed with facial palsy and her face slowly recovered but she suffered with painful cold sores and swellings on her face throughout childhood.

Cate Wallwork, 51, was diagnosed at 16 with Bell’s Palsy when her face dropped again - she never recovered. 

Cate said: “I got them [cold sores] all around my mouth, up my face and in my nose. My self-confidence was badly affected, I was shunned because of the scabbiness and called a lot of names.”

A third episode of facial palsy at 17 on the other side of her face completely robbed her of the ability to smile.

Cate explains: “My eyes watered every time I ate, I called it ‘salivating out my eyes’. I had painful sores and swellings and I couldn’t smile or frown. You spend most of your life trying to explain why you are like you are. You hear people discussing what has happened to you, fantastical theories that are not true. I was in a club when I was 17 and an older man called me ‘Quasimodo’.”

Most patients with facial paralysis are referred to ENT Ear Nose and Throat (ENT) according to Facial Palsy UK. ENT believed Cate might have Ramsay Hunt syndrome, a complication of shingles, but they weren’t sure.

When she was 19, Cate’s GP asked her to meet with a friend, a Professor of Virology. Cate said: “He took one look inside my mouth and immediately diagnosed Melkersson-Rosenthal syndrome which was causing all my symptoms. He prescribed acyclovir and immediately I started to have less flare ups. From the age of 19 I have had no further specialist follow-up for this condition. I now work as a theatre nurse and one of my colleagues is now trying to help me access specialist help for the facial palsy.”

According to consultant plastic surgeon and founder of Facial Palsy UK Charles Nduka: “Patients across the UK are suffering from delayed diagnosis, a lack of awareness of suitable treatments amongst some health professionals, and a poor appreciation of the psycho-social implications of losing the ability to smile and the use of one or both sides of the face. Clearly there is a need for more awareness of all causes of facial palsy given the life-changing consequences. It’s important that patients are treated holistically by experts because often other symptoms are missed.”

Cate may not be the only person who was misdiagnosed, she said: “When I did more online research into Melkersson-Rosenthal syndrome I found that it could be linked to Sarcoidosis. My father died at 57 of Sarcoidosis so I was quite worried. My dad also suffered a lot with cold sores as a child and I wonder now if he had the same condition but was never diagnosed.”

As part of Facial Palsy Awareness Week (1-7 March) the charity is calling for more awareness about facial palsy and better pathways of care for those affected.

For more information visit:

 www.facialpalsy.org.uk