Today is International Behcet’s Disease Day and as the initiator of the Behcet’s Disease Montreal area support group, I would like to give you some insight into our world.
In November 2016, I was diagnosed with Behcet's Disease, a rare, chronic, polysystemic inflammatory disorder/auto-immune disease. The primary symptoms of Behcet's Disease include canker sores/ulcers which may appear in the mouth, on the skin and on the genitals, arthritis (swollen, painful, stiff joints) and inflammation of the digestive tract, brain and spinal cord. It can also lead to blindness and even death. The exact cause of Behcet's Disease is unknown. Most symptoms of the disease are caused by inflammation of the blood vessels. Inflammation is a characteristic reaction of the body to injury or disease and is marked by four signs - swelling, redness, heat and pain.
What happens when you receive a diagnosis for a rare, incurable auto-immune disease? For some of us it’s a relief, because then they know it’s not in their head and they’re not crazy, while for others, like me it was like being hit by a truck, because I thought it was only something minor and I didn’t see it coming.
For some of us it takes a long time (years) to be diagnosed with Behcet’s Disease, because the flare-ups come and go and the disease mimics other conditions such as Crohn’s, Multiple Sclerosis and chronic fatigue to name a few. I was lucky because in my case it only took 9 months. Once diagnosed, it is sometimes difficult to get proper medical care (as it is with all orphan diseases). Currently, there are no medications that specifically target this disease, so we must try medications designed for other diseases, sometimes in combination, including chemotherapy to see what does or doesn’t work for each person on an individual basis. This trial and error process of experimentation can take a toll on our bodies and our minds.
Work can also be an issue. When the disease is under control or we are in remission there are no problems, but when we have flare-ups there could be. Some of us feel secretly ashamed and hide our condition, because of the stigma associated with it, especially, if we are starting a new job. In my case, traditional medicine wasn't working well and I was getting worse, to the point where I was nearly incapacitated about a year and half ago. I had just lost a job because of the disease and I wanted to explore the possibilities of turning my life around with a combination of food and lifestyle changes in addition to traditional medical treatments. I consulted a nutritionist to help me choose the right diet/lifestyle to treat my disease, who gave me broad guidelines and studies to read.
I now follow a modified anti-inflammatory diet/lifestyle which I believed has helped to restore my energy level (another side effect of the disease) which in combination with a combination of medications enables me to lead a normal life. I exercise regularly, I've lost 25 lbs, I meditate and so much more. I no longer eat meat, dairy products or overly processed food. I still eat eggs and fish, but the rest of my diet is plant-based, so pizza lunches and sandwich buffets are a no-go for me. So how do you deal with such situations? You can always say that you are Vegan, but people may ask you all kinds of questions about Veganism that you can’t answer. On the other hand, if you say it’s for medical reasons you may be opening yourself up to a whole different line of questions, which you might not feel comfortable answering. Some of us are disabled, some of us have regular jobs, while others like me are self-employed.
Family life can also be difficult, especially when a flare-up makes you sick. Flare-ups can last from a couple of hours to months. Some people have lost partners due to the disease. When it comes to kids, it is even more difficult.
Although it can sound awful and it is at times, people with Behcet’s Disease can still lead healthy, productive lives. People with the disease can be healthier than those without because to some extent we are forced to take better care of ourselves. There is some research being conducted on Behcet’s in both Canada and the States and we hope they will eventually find a cure or at least a broadly effective treatment for our disease.
Let’s spread the word!