Mine is the story of a 35 year old man in England who has only recently been formally diagnosed with Sjogren's Syndrome.

     From my teens if not earlier, I suffered from far more than the average number of dental problems.  I seemed to attract fillings and extractions the way English streets attract rain.  Over time this became increasingly severe, with fillings and extractions being ever more common and drastic.  There was also a constant stream of mouth and throat ulcers.  As soon as anything broke a tissue I could guarantee a crop of ulcers would appear.

     I would find myself constantly embarrassed in the dentist's chair, being scolded for not exercising proper dental hygiene.  OK, I have a well-known love of  chocolate, coffee and biscuits - but I still believe I made reasonable efforts to brush up after wards.

     I started getting seriously painful ulceration on the insides of both cheeks, towards the back and always in the same place.  I now know these are the areas where some saliva glands have "outlets".  At the time though, the baffled dentists X-rayed me and studied how my jaws came together.  They concluded I must be biting my cheeks in my sleep.  Eventually over time all four wisdom teeth were extracted as the probable cause.

     I started finding myself drinking all the time over the coming years, I would constantly feel parched and thirsty.  I started looking into diabetes as a possible explanation but tests on several occasions concluded I was clear of this.  I put it down to "just one of those things" and would always have a glass of water by the bedside at night.  I would also find increasingly frequent sticky deposits on my teeth which were both embarrassing and unsightly.

     Sometime around June 98 I found a lump at the back of my jaw on one side of my face so I sought advice.  It was concluded that I had a pleomorphic adenoma which required surgery to remove.  A work colleague had the same thing a few years back and had the operation.  It was a success but there was noticeable scarring and a hollow in the back of the jaw line.  Of more concern to me was that the procedure would be quite fiddly and would carry a degree of risk, due to the complex configuration of nerves in the area.

     After a CT scan and biopsy showed nothing conclusive, I was put on a waiting list for the operation.  I then began to notice that my dry mouth was getting dramatically more severe, to the extent that I could not talk for any length of time without water, and it was increasingly uncomfortable to lie down for very long without getting up coughing and spluttering.

     Time passed along (our waiting lists are the stuff of legend) and around January 2000 I developed a second lump on the other side of the face.  Now this is the point where I began to panic.  To get one adenoma would seem to be fairly common.  To get TWO, it was practically unheard of.  So my General Practitioner put me back in touch with the hospital, which had seen a change in consultants since my initial assessment.  My fear was that I had cancer.  

     The new consultant impressed me immediately.  He kept me on the surgery list but ordered a different series of tests.  One of his first words used was auto immunity, and a blood test was ordered directly.  An MRI scan also took place fairly soon after wards.  When the results were in I went back to see him and was told that the tests INDICATED this thing called Sjogren's Syndrome.  I had never heard of it and neither had any work colleagues or other acquaintances.  He stressed that further testing was required so I had a lip biopsy under local anesthetic at the hospital.  In a further consultation I was told that I did indeed have SS.

     All indications so far suggest that I have primary SS as I do not appear to be affected by the various secondary issues such as connective tissue problems.  All I have are the dry eyes and mouth, and a sense of general tiredness and feeling run-down.  I feel lousy and bunged-up in the mornings but a good cough and splutter usually sorts that problem out :-) Oh, and don't ask me to give you a lift into town when the sun is bright...

     For me then, the future so far looks quite favorable.  I am awaiting the date for a Schirmer test on my eyes, but have already started dealing more specifically with the optician and dentist to establish a careful long-term plan of management for my SS.  I am now on artificial tears and artificial saliva, both of which are a great help.

     Of course I cannot say what is around the corner, and have a review in 6 months with the Rheumatologist to confirm that I am not developing any secondary symptoms.  On the assumption that this stays clear, I am able to reflect quite positively on my fortunate experience.

     A lot of the problems I have had may not be due to SS, and it would be easy to fall into the trap of blaming everything on the condition.  Still, there have been clues for quite some time, and they have been missed because SS is not very commonly publicized over here.  What I would ideally like to see is a greater awareness of SS, with the simpler tests carried out more routinely to save a lot of agonizing waits and incomplete diagnoses.

     So far I have clearly escaped quite lightly compared to many other SS sufferers out there with far more severe problems and experiences.  The dry mouth is my biggest problem, and it really is quite a tough one to crack, causing me a lot of discomfort and difficulty eating.  Still, it can be managed now that I know what I am dealing with.  If that is the worst thing which will ever happen to me, then I am indeed a lucky man.

     A great many niggling problems over the years now have some sort of context.  I take the view that knowing the cause of a problem is half the battle towards being able to deal with it.  Whether I will still be as positive in a few years from now - well, who can say?

     As to the rest of the story, I am still quite optimistic but my SS has started to take its toll somewhat.  I've had a spate of flareups, and I am now facing the prospect of possibly having a slow-developing lymphoma beneath the left parotid gland (the first one to flare up all those years ago).  Makes being up-beat and positive a bit more difficult, but I still hold the strong belief that knowing about these problems is halfway towards dealing with them.

     I heard a quite inspiring quote attributed to Sean Connery today.  It was to do with a TV popstar competition, but it seemed quite relevant in this context as well: "You've only lost when you give up".  That's how I feel about it.  I try to live my life as somebody who just happens to have SS, rather than as a SS sufferer (if you know what I mean).  Still, it has coloured my life and exerts increasing influence on who I am and what I do.