It took years for Cate to discover that a rare condition called Melkersson-Rosenthal syndrome was the cause of her childhood cold sores.
My mother told me I was just three years old when my health issues started. She said my sister woke me one morning and got a shock, she thought I was paralysed all down the left side of my face and body. She went crying to our mum who panicked and took me straight to hospital. The paralysis turned out to just be in my face and not my whole left side, my notes say I had facial palsy.
I had residual problems for many years, I had a weakness in my eye and my mum used to make me chew chewing gum because she thought it would help my muscles get stronger. Over the years it resolved but at the same time I started to get very bad cold sores. There were frequent attacks and they would turn into impetigo. They weren’t little tiny things, they would be all around my mouth, up my face and in my nose. During my developmental years my self-confidence was badly affected, I was shunned because of the scabbiness. I got called a lot of names but I still went out. Up until then this was my major problem as the facial palsy had resolved by now.
When I first started work at age 16 I developed a huge cold sore on my chin, it was swollen like an egg. I had to take a day off sick because I couldn’t get out of bed. When I eventually got up I tried to eat some toast and drink my tea and I couldn’t. 13 years later the left side of my face had dropped again. The doctor diagnosed me with Bell’s palsy and said it would resolve in 6-10 weeks. He gave me some steroids, eye drops and said he would refer me for physio. I was given electrical stimulation, massage and heat treatment for several weeks. This time it didn’t fully resolve. I was able to blink again but my face was very uneven. No other treatment was offered and my doctor said I had just been unlucky. I was a 16 year old out in the world, left to deal with it on my own. I didn’t want to go out, I didn’t want to see anybody. I couldn’t go out for a drink without dribbling and people are not very kind. They would ask my mum “Has she had an accident?” That upset me greatly. I fell out with my mum at the time because I felt she should have defended me more.
12 months later I became unluckier still when I got a right-sided facial palsy. I was offered the same treatment again, electrical stimulation and heat therapy. But there was never any psychological support offered.
I was feeling quite vulnerable, I had no self-confidence and was very self-aware. I turned into a bit of a devil and became a punk rocker. I wouldn’t look in the mirror and I grew my fringe to cover my face. I was a very shy teenager hiding behind this very extravagant external appearance with orange hair and leather and buckles. I struggled to look people in the eye and was told off at work because of it. My boss said I had to look him in the eye when I talk to him because he couldn’t trust anybody who wouldn’t look you in the eye. I think he was trying to instil some confidence in me but it didn’t come across that way. My perception was that everyone treated me like I was sub-human. People didn’t understand. It always felt like people were thinking ‘there’s something wrong with her, what is wrong with her?’ Sometimes people would ask my friends, sometimes they would ask me directly. I didn’t mind telling people but I didn’t really know what to tell them. I had a mixture of symptoms, the painful swellings, cold sores and the facial paralysis, and I was ill quite often. But I didn’t really know myself what was wrong with me.
My eye blink eventually came back but that was the only recovery I had. One of the problems I had was my eyes watered every time I ate, I called it ‘salivating out my eyes’, I now know this is called synkinesis. I always needed tissues at mealtimes to mop up my tears. I had my first proper boyfriend at 18 and we went to his parents for Christmas dinner. It was a family custom to exchange a small gift at the dinner table. When I opened mine it was a box of tissues which I was very upset about. I stormed out and it ruined Christmas for everybody. These things stay with you, they hurt. The only positive was my face was more even now because both sides were paralysed. But I can’t smile or show my teeth and I can’t frown. I also can’t whistle or blow a balloon up, but that’s not the be all and end all.
People that know me say they can’t notice it but strangers ask things like “Have you just been to the dentist?” and you spend most of your life trying to explain why you are like you are. I don’t know why people can’t just accept that ‘you are you’. You hear people discussing what has happened to you, fantastical theories that aren’t true. I was in a club when I was 17 and an older man called me ‘Quasimodo’ and thought it was funny. One of my dad’s friends heard him and told him he would have him barred if he continued. Being treated like this made me very hard and tough, I shut myself off to a lot of people because of it.
At 18 I was sent to ENT because I continued to get cold sores and horrible swellings. My gums and lips would swell, they still do. I get flu-like symptoms when things flare up. ENT took lots of pictures of me to use in their medical books for teaching purposes. They thought I might have Ramsay Hunt syndrome but weren’t sure. No further help was offered.
When I was 19 my GP mentioned he had a friend who was a Professor of Virology and he wanted me to meet him in Manchester. He took one look inside my mouth and immediately diagnosed me with Melkersson-Rosenthal syndrome, he explained this was causing all my symptoms. He told me there was a brand new antiviral drug called acyclovir which could help me. I was very excited. I had to take it five times a day so I had to set my alarm for 2 a.m. each day to take it correctly. It worked, I started to have less flare ups. The damage to my face from previous flare ups is permanent but the new drug helped to keep new symptoms at bay. I just take the antivirals when I need them now. As it was such a new drug I was told I wasn’t allowed to get pregnant while taking it. It was unknown at that time whether it would affect the foetus. This has stopped me from having children because I didn’t want to risk this or risk passing any gene on. I knew if I stopped taking the treatment while I was pregnant I would be more susceptible to a flare up. I am 51 this year and I am childless. I had one follow up with the Professor but then he moved to Africa. From the age of 19 I’ve not had any more specialist medical input for the Melkersson-Rosenthal syndrome. I haven’t followed it up myself and just assume I have to live with it now. I discovered Virulite which is an amazing piece of equipment. For me it stops cold sores in their tracks.
My marriage ended after we’d been together for 20 years and I found myself back on the dating scene at age 43 which was quite daunting. I don’t like photographs of myself, I don’t like looking in the mirror, it stings when I catch myself in the mirror unexpectedly. I did meet someone else and he saw past my facial palsy straightaway.
I work as a Theatre Nurse and a couple of years ago I started working with an ENT surgeon. We got talking about my facial palsy one day and he said there is help out there. He asked me to go back to my GP and get referred to him, he in turn said he could refer me to a Facial Function Clinic in Manchester. There was the possibility of surgery and physiotherapy. I talked to my partner about the options and he said “Look, you’ve lived with this for more than 30 years. Do you really want people prodding and poking at you, haven’t you been through enough?” I decided not to pursue it at the time, although I haven’t written it off altogether and am still considering exploring more options.
There are always reminders, just the other day someone was struggling to understand what I was saying. I still have problems pronouncing b’s, p’s, m’s and v’s and people misunderstand me. They also struggle to read my facial expressions because my face doesn’t work how it should do. My palsy and speech are always at their worst when I’m stressed or tired. I’ve also got thyroid issues and as a result am quite overweight. Combined with having bilateral facial palsy it has affected my confidence greatly. I’ve had several breakdowns.
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. I went to my GP and they said it was a valid concern so I was sent for tests which came back clear but they are going to screen me regularly.
I have never talked to anyone else with the condition and have felt isolated all my life. There needs to be more education for others and support for families. Parents are frightened and they need to know what they are dealing with. Children need to be supported so they feel normalised, they need to be taught that their face is not the whole of them and that they can be strong. Don’t wrap kids in cotton wool but give them the support they need.
The one bonus from this condition. I have very few wrinkles!
Disclaimer: Please note that views expressed are person’s own and should not be considered a recommendation of particular medical treatments, therapies or surgeries. We would always advise you seek advice from a health professional with experience in facial palsy who can assess your individual needs.
Last reviewed: 18-02-2018 || Next review due: 18-02-2021