Since I was a youngster I was plagued with horrific mouth ulcers, these were treated by many methods, lozenges, lotions, cautery and much more. I was accused of bad mouth hygiene, bad diet, even scratching my mouth inside with boiled sweets! Early in my teens the genital ulcers presented themselves with vengeance, accompanied with joint pains, neurological problems, ophthalmic problems and awful skin lesions. It was the early sixties, and no one had any answers. I spent some weeks in a major neurological unit, having terribly painful injections which didn't seem to help. Finally my parents were told I'd have to live with whatever was causing the problems. As I'd been brought up in a remote part of West Africa it was even suggested I had some weird tropical disease. Time passed, I managed to train as a nurse, and nursed both my parents through terminal illnesses. Perpetually exhausted and in pain, my body seemed to react by having more frequent attacks and I became quite incapacitated. Eighteen years ago a terrific Consultant diagnosed me, his diagnosis has subsequently been confirmed by two other specialists and also included the probability that I have Fibromyalgia as well. Knowing I was no longer being considered a hypochondriac and that I was really being taken seriously I started to take on my condition and learn about it, in order to have a better quality of life. My oral ulcers have eased a lot, but I believe that because I now wear dentures these don't cause the microscopic scratches that my real teeth did to the mucous membrane which then became ulcers.( just my theory). I still get oral ulcers, but suffer much worse ulceration genitally and in my nose. The headaches are pretty unbearable and the neurological and rheumatic problems drag me down. My eyes are letting me down, and there is so much more. But I have a fantastic GP, Consultant and above all a Society with specialist knowledge who take care of me, but most of all I take care of me by finding out what best works for me as an individual, accepting there are good and bad days, and especially making the most of the good days. I know I cannot beat this disease, but I can live with it and make the most of the help available.
Loneliness and isolation are the biggest problems I personally face, but this is where sites like this are great, I also try to keep very busy, health allowing, and in the future hope to get people like myself to get together without just talking about our health even though we are aware we have the same diagnosis, to just chat or maybe even share interests.
That's me, 60 in June, going on 18, old crock ,but young at heart, this disease is not going to deny me a fulfilling life.
Bless everybody who suffers this disease/syndrome, the patients, the families, friends and the medical staff who so want to help us but don't always have an answer. Above all THANKYOU to The Behcets Syndrome Society. You do help more than you can ever know.
Written by
Jennie-Meg
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What an inspiring post, thank you. Your journey to diagnosis will be familiar to many of us sadly, but nowadays it seems much quicker and as you say, the support available is fantastic.
Regarding setting up a group, are you in the UK? If so the Society can tell you of any groups or people wanting to meet up in your area. Likewise, you can register your interest in setting up a group and being contacted and they can share this with others.
We don't just talk about illness, but make new friends who understand what we are going through and also share day to day news, interests - whatever we feel like talking about! Friends and family are welcome too and this can be a great help to them. Some groups have regular 'whole group' meetings and members meet up in smaller groups and do things together too. You can also exchange email and phone numbers and be in contact with people all over the world.
This group is amazing, a mix of young and old, patients and families, all with something to offer, even though they may not all realise it. As for being an old crock, welcome to the club, there are a few of us here. However, like you, most of us are in our second childhoods, or maybe our 3rd or 5th, with a fun sense of humour and an overall positive approach to life, but we know when we are struggling, or just want to rant, everyone understands. It's a place where you can just 'be.'
hello jennie meg like you i am also new to this forum and already i feel like part of the family and have gotten some great advice and direction everyone here is battling the beast that is bechets so keep fighting and never give up and most of all keep your sense of humour welcome to the family regards and good health
Such an inspiring post! Thanks for sharing your story. Like you, I refuse to allow Behcet's to own me - I own it, and will never allow it to break my spirit!
You story sounds so familiar as at the onset of my illness it was thoughT I had either some kind of tropical disease that had lain dormant or ( sorry memory mishap...and/or old age) basically I lived in the Middle East for over 20 years and was there when Saddam first took Kuwait and they thought it was possibly some kind of chemical problem. Back in UK same reasoning and then also ATD. After 12 years a diagnosis which I may have been waiting even longer for if it wasn't for the help of a wonderful lady named Penny (now retired ) only helpline number at the start of Behcets Society and like you I cannot thank them enough for all their help and accomplishments since those many years ago.
We have to keep on fighting within ourselves and enjoy the good times and as I always like to say and do...KEEP SMILING!!!
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