The story of Michael
Behcet’s Disease pronounced “Betjets” or “Besh-hays” is as I know it a persistent inflammatory condition associated with impaired auto immunity and pain. The symptoms persist and reoccur over long periods, all individuals chiefly present a common syndrome of 3 symptoms, plus an additional 1 or 2 more to complicate and broaden matters. It is for many a lifelong painful disease that is incurable.
I was 15 when I first presented inflammation in both eyes to my GP, who concluded it was ‘conjunctivitis’ and prescribed me a tube of ointment, 4 weeks later I returned to my GP presenting inflammation in my eye, a telephone call was made and I was examined at the Eye Department of my local hospital “You have ‘Iritis’ take these eye drops daily and come back in 2 weeks” so I went back, “come back in 2 weeks”… “continue taking the drops come back in 4 weeks”. This went on for several months. Then I was given an appointment to see a Senior Eye Consultant, yet another appointment… Back I went… “Take a seat”… “How are you”… Apart from the Iritis do you have any other symptoms? Err… Yes I have red warm tender lumps on my shins that come and go… “Oh…” “Have you got mouth ulcers? I have had some recently but none at the moment… “How many two or three together”? Oh… 1 followed quickly by another… sometimes just one! I have a painful hot calf muscle… “Okay I am referring you to a Paediatrician for investigation!”… Several more months past while under Paediatrician care during which I underwent several blood tests, an x ray, a duodenum biopsy, a kviem test, and a biopsy of a tender lump on my shin along with a short course of Erythromycin, a short course of Steroids, eye drops for Iritis, GP appointments, eye department appointments on top of attending school and revising for important end of school education exams. Then one day at the age of 16 a grey green wisp of what I would describe as a streak of ink appeared in the vision of my eye and it would come and go each time becoming more cloud like, I realised that something was definitely not right. I went to the Eye Department and was told a vein in the Retina had haemorrhaged and that it will probably lead to me losing my sight in that eye which it did. The haemorrhage was photographed and lased by a Senior Eye Consultant who referred me to a Senior Eye Consultant at Moorfields Hospital in London. On my first visit to Moorfields Hospital with my Mum, we explained to two Eye Consultants both of whom had seen and diagnosed numerous cases of Behçet’s Disease what had been happening, they examined my eyes and looked at other symptoms I was presenting and asked about others… “We believe you have Behçet’s Disease”. My mind switched off for a while as Behçet’s Disease was explained to me, probably due in part to worry, the trip to London , crossing London and the stress of being examined and question by Consultants who were very serious…. The big wide world that teachers and parents warn us of had just swallowed me in 1 large mouthful. “We have a Colleague at Northwick Park Hospital in Harrow who has an interest in and treats Behçet’s Disease patients; I would like to referrer you to him”. A week later and just over a year since my GP prescribed a tube of ointment for suspected Conjunctivitis I was sitting with my parents in the Out-Patient Department at Northwick Park Hospital in Harrow. I had informed my GP of my diagnosis, he had received a letter confirming this from Moorfields his reaction was to say “that’s what we thought”! Hell… that’s no consolation to me! Just over a week later I was admitted as inpatient on a Rheumatology Ward at Northwick Park Hospital, it was a mixed ward, very relaxed with adults, young teens and day patients, we were all on first name terms with each other and with the nursing staff. I like most inpatients to the Ward were well so like the others I had to be up, dressed and mixing with others in the Day Room ready when called for a test, examination, chat, observation or check, I even helped with the tea trolley round and the odd errand to the League of Friends shop for someone, it was at this stage that I meet for the first time another patient with Behçet’s Disease, a lady from Swansea who had been blinded in both eyes by Behçet’s Disease. On one occasion my Consultant along with the Ward Consultant and Houseman presented me to Junior Doctors and Medical Students in the Hospital Lecture Theatre, there was I sat in a chair with 3 Doctors explaining my case and then I was answering questions with some prodding. My Consultant after consulting my test results, ward notes and observations and in consultation with my Consultants at Moorfields Hospital prescribed me a yearlong treatment of Cyclosporine A along with further Outpatient Appointments, I was blessed with a good Father who cared and for many months and years drove me to and from London to home 140 miles, he’s no longer with us but I have fond memories of our many chats and discussions in the car. Cyclosporine A back then brought with it the need for a weekly blood test and on more than 4 or 5 occasions it turn in to more than 1 jab as a hunt for a vein that would bleed was the aim of the day, these punctures did on occasion sufferate. The Iritis waxed on as did conjunctivitis, mouth ulcers, phlebitis for several months, I was seeing my GP, and Consultants in Out-Patients at Moorfields and Northwick Park Hospital’s. A year had past and my first genital ulcers started to appear, I reported this to my GP and my Consultant at Northwick Park Hospital who admitted to the Rheumatology Ward and put me on a 3 week course of ALG (Anti-Lymphocyte Globulin) by drip driver, I was kept isolated from others on the Ward my only company was a nurse who monitored the drip, took observations, kept me cheerful and saw to bringing in meals etc. That done I was the prescribed Prednisolone and Azathioprine. A while later I was on a weeklong stay on the Rheumatology Ward at Northwick Park probably 1985 and 1 afternoon a Lady in a wheelchair arrived on the Ward she was in the Day Room with a cup of coffee in her hand, I passed her and took a seat and after a few silent minutes she asked me “What is it that you have” Oh I have Behçet’s Disease… “Do you” she said “so do I” her name was Judith Buckle, she was only the president and founder of The Behçet’s Disease Society, I was quite elated and chatted more than several times over the following days. More than several months had passed I was being seen at outpatients at St Thomas’s and Northwick Park Hospitals, it was 1986 I was working part-time when out of the blue a Hypopyon appeared, at first it resembled a white sunrise in my lower Iris it then change to a yellow greenish fluid that would float around the Iris stirred up by movement of the eye. I went along to my local hospital eye department and was admitted, on several occasions a needle was inserted into my Iris and the fluid drained but to no avail… it built up and came back. On a visit for a 48 hour stay at Northwick Park Hospital I had a short course of Thalidomide and another of Acyclovir for several months for my mouth ulcers which did help, suppression with Prednisolone and Azathioprine was also continuing as were the outpatient appointments both in London and locally along with visits to my GP… After several years my Behçet’s decided to present in my blood vessels, I was having lots of clotting episodes in my calf muscles and was admitted to the Rheumatology Ward at Northwick Park Hospital. I had a venous endoscopy via my feet which left my hamstring bruised purple black, a prothrombin time test and more blood tests, I was prescribed Warfarin which I took for several months and suppression continued with Prednisolone and Azathioprine then came fluid retention caused by a suspected blood clot followed by several days on a Heparin drip at my local general hospital at this stage I had had Behçet’s Disease for just over 10 years the treatments were working I was free of Iritis, mouth ulcers, lumps, flare ups etc! Three to four years later began to see light at the end of the tunnel I had been transiting, the tide had changed. it was 1996, I had been to college and gain a trade and found full time work, Prednisolone had led to a cataract and Azathioprine to Osteoporosis, I weaned myself off of very low dosage treatment which my Eye Consultant was edging slowly towards, a belief and a strong conviction that Behçet’s had run its course took hold of me. A sudden rush of want to move on in other directions, I don’t want to stay this way gripped me. Today I am free of Behçet’s Disease, or me it is no more, it’s a memory of 22 years ago although “I live and suffer with its legacy today and will do so for the rest of my days I will never forget my journey or the people who helped and treated my disease”! God bless them all.