I was trying to concentrate on issues and questions that have been on my mind through the years, as I was living with and learning about BD. The original talk had to be short, so often I referred listeners to my written abstract, but this is a revised and full version of what I wanted to say. Feel free to skip to the bits you are interested in, if there are any.
A recent letter I received stated "I am surprised that so many people in your family have BD. I was told it was not hereditary."
My family is a classic case for heredity. No two generations were born or lived in the same country, or in similar weather patterns. Socio-economic status varies greatly between us, as does diet, and couples are internationally mixed.
My mother (probably also my grandmother and most of my mom's six brothers and sisters) - Born in Iraq, both her parents were Iraqi Jews. They were very wealthy through her early childhood, but it did not last past that.
Myself and my brother - Born in Israel, to a mixed couple. My mother an Iraqi Jew, my father a first generation Israeli Jew of East-European descent (Poland/Russia/Romania). We were not well off through my childhood.
My children - Both born in Japan, lived in Spain for a while. Their mother, myself, mixed all over the place as you just heard, their father a British non-Jew, so there goes the only common factor so far. When my son was born we were very poor, but we were financially-comfortable by the time my daughter was born.
My mother, and probably most of her family, my only brother, both my children and myself have Behcet's.
Dr. Madanat's figures yesterday showed that in 18.6% of Jordanian patients, at least one other member of the family had been diagnosed with BD. We were told there was a familial tendency, but BD is not hereditary. I'm sorry, I don't understand that.
Many of you that I have talked to here started off saying "My children do not have BD, because it is not hereditary", but after a while said "well, now that you mention it, he/she does have aphthae, and skin lesions, and other things". It has been documented that autoimmune disorders are generally hereditary.
It is also possible that the way we look at things is partially responsible. Some of us will go as far as seeing things that do not exist , just because they look too hard. Some may see in others (children or not) what they have, because they are more aware of it. Others still will rather not see the disease in others, particularly their children, as we do not wish this limiting condition on our family.
Symptoms and clinical test results seem to vary greatly from region to region, enough to cause controversy over the international criteria for diagnosis of BD. The disease also seems to be a lot more common in some regions than it is in others.
How much of it is due to actual geographic differences, and how much is due to doctors being set on certain ideas I do not know. I was tested for RF, FMF, SLE, cancer, marfan and many others before BD was first suspected, because it was less known at the time, and there were only a few patients diagnosed with the disease in Israel then. I was originally told I must be Turkish if I had the disease. I'm not, but I do have it. The new criteria stipulates that one must have ROU to be diagnosed with Behcet's, but some countries show only 90% of patients with ROU. In Japan, for example, any two minor criteria can replace a major one, but not anywhere else that I know of.
Maybe doctors look more readily for BD in some regions than they do in others, and that makes some of the difference. Maybe they also notice different symptoms in different countries more, because that is what they know to look for. The number of patients continues to increase rapidly in countries where the disease is known to be less rare, but is that because it is now suspected more easily there than before?
If a survey of a representative sample of the population of each and every country of the world was conducted, using agreed upon criteria, what would be the percentage of BD patients in each place? If we were all asked the same questions, looking for the same symptoms, how many of us would show to have more in common?
The onset of Behcet's Disease is said to be between 20s-40s. I was diagnosed at 17, following five years of investigations into my condition, but I have had symptoms of the disease ever since I can remember myself. A lot of you here said that in hindsight it was the same for you. Is the onset really late, or are we late to recognise the disease?
Children's complaints are often dismissed or ignored. They are frequently labeled as lazy and spoiled. It often takes a major event for anybody to be taken seriously, or to be diagnosed. Rare diseases are not normally suspected, I noticed it took most of us quite a while to be diagnosed, and it is even more so for the young.
I wonder how many children would be found to have BD if greater attention was paid to their complaints.
A lot of research now concentrates on finding the trigger of BD. The reason being there seem to be tendencies in much more people than only those who develop the disease. That is a very good idea. However, I wanted to suggest that there might be more to it than just that.
Is it possible that a sudden bad development triggers our attention to a condition we already have, rather than something triggers the disease at that time?
For example, I had always had ROU (aphtha) and suffered a lot from headache, stomachache, skin lesions etc. However, I first saw the doctor when my joints hurt so bad I could not walk. Prior to that time, neither I nor did my family realise anything medical was wrong with me. Maybe something did trigger the disease originally, but by the time I was examined it had to be long gone.
There are definitely triggers to flares, though, and it is up to us as individuals to find them and avoid them.
My husband once defined autoimmune diseases as a case of a salad-bar. You get a plate and you put a few different things on it. Most of the salads will be found on more than one plate, but most plates will have a different combination on them. We noticed that autoimmune disorders behave similarly. They often share a lot of symptoms, sometimes to the point it is difficult to tell the difference between them.
Yet at the same time, the symptoms of BD alone seem to vary not only geographically, but also between individuals.
Could the trigger mentioned earlier be an important factor in all that? For example, could we be born with a general tendency to autoimmune diseases, then once we were exposed to a certain trigger it would determine what disease we would get? Or could it decide what symptoms might show more strongly in each of us, or just "how bad" we have it?
I have often read that Behcet's Disease tends to get better with time, or even burns itself out. That's a nice thought, and I was pleased to hear some people here saying it was true for them, although mostly they would say their condition was kept under control, by way of medicine or diet, rather than gone.
I'm afraid in my case, I still keep adding more and more new symptoms all the time, with some growing worse with the years. I do not think I am a rare example, on the contrary, so it is important for me to be clear on this issue.
I could suggest a few reasons how doctors got to that conclusion, though. We all have our ups and downs, and at least some of us learn to live with it with time. A lot of us get sick of constantly seeing doctors and hospitals, trying drug after drug and failing to make any progress. The frequent visits to the clinic sometimes add unnecessary stress to our already full lives, which in many of us triggers flares, too. We already know what we have and what we should do about it, and the doctor cannot do more than that for us. Some seek alternative treatment when all else fails. So altogether, I think many patients feel they are better off not going to the doctor's anymore, unless a life-threatening situation occurs. Therefore we are considered in full remission forever past the first few years of severe symptoms. The doctors simply do not have any good reason to think otherwise.
I wish to also stress that in my case and for many people I know, flares are not the only time of distress, but rather a worse time, and we never have a day free or even nearly free of symptoms.
In my experience, whenever my body is busy or weak, BD seizes the opportunity for a flare. That can be during or after illness, after (multiple) vaccines, in bad weather (particularly high humidity and extreme temperatures or rapid changes), when exhausted (by overwork, lack of sleep or too much exercise), during pregnancy and labour (you should never go through that without careful preparations), when stressed - so many of us here mentioned that, or when not exercising enough. Certain foods can also do it - that is another thing that has been mentioned a lot here already, as in some cases tight clothes, perhaps because they burden our blood flow.
Knowing these things does not automatically mean that we can avoid them, but we can at least try, as BD does not need to be provoked very hard to show us what it can do.
The following is a list of things I found to help me, or heard from others that they helped them. I am not medically trained and this is not instead of a physician's consultation. You should always seek medical advice before trying anything new, and trying any of this is at your own risk. You should also bear in mind that every method affects each one of us differently.
Dietary supplements (vitamin B-12 and other vitamins and minerals - although some people seem to benefit from less minerals in their diet; friendly enzymes and bacteria- particularly for GI complications; propolis, aloe-vera and others).
Shiatsu and acupuncture.
A healthy diet- possibly a diet tailored to your specific needs.
As little exposure to harmful chemicals as possible (be it in the food you eat, the water you drink or the air you breath). This is a tough one to achieve, but a good one to strive for, even if you don't have BD.
Topical application of medicine or other remedies (for eye, skin, joint and muscle trouble)
All these are usually non-controlled experiments, and as such are difficult to prove. Time often tells individuals what may work for them.
Most of the time (but not all) we follow a somewhat stricter diet than most people's. We have tried a lot of things, mostly in the field of natural (alternative) medicine. We take quite a lot of supplements, particularly vitamin B-12 and anti-oxidants, but in times of illness or flare many others, too. The general idea is to keep things from getting to the stage where BD can take advantage of our weakness. It took us a while, but we managed to find good exercise programs for all of us - not too little, not too much, very little impact or none at all. Smiling and thinking positive can make all the difference, so we stick to that as hard as we can. But more than anything else we appreciate each other's help and support, and in particular my husband's, who has to fight for all three of us at the same time.
We often go misdiagnosed for years, before finally being diagnosed with BD, and then we still get diagnosed for all sort of diseases, when in fact all symptoms come from the same place, still BD. Between the lack of comprehensive knowledge of the disease in most doctors, and our own incomplete information, we often simply do not know that things are related. I have been accused by doctors for not giving them the full picture (like when I did not tell about my mouth-ulcers, since I had always had them and thought everybody else must have done), and was angry not to be asked about many other possible complications that I might have had already, as well as not to be advised as to what may happen in my future.
I think doctors should make a better effort studying this disease and asking their patients in detail about any symptom they can potentially experience, but I also think that once we have been diagnosed, our best weapon to fight BD with is knowledge, which we can obtain a lot more easily now than in the past.
I therefore strongly recommend that you regularly check out this site and the BOW site and its links :-)