Wednesday, December 17, 2008

What is Behcets? But you don't look sick!

Many people give me a blank look when I tell them I have Behcets. Often they tell me,
"But you don't look sick." If only it was true.

Looking back I've had Behcets Disease most of my life. As a child I would get weird skin rashes and ulcers in my mouth and genitals. I often had stomach aches in school and my parents were told I was painfully shy and had emotional issues, because there was nothing really wrong with me. So I spent hours in the therapist's office being made to feel that I was doing this to myself. I even had a period where I had numbness on my right side and spent a week in the hospital as a teenager. My parents were told I was a suicide risk, because I was incapable of handling the stress of high school and my numbness was "psychologically based." The truth of the matter was that I have never had a suicidal thought in my life. And 30 years later I now know, the episode was probably due to neurological Behcets.

Behcets is a rare autoimmune disorder of the blood vessels. Behçets disease is common in the Middle East, Asia, and Japan. It is rare in the United States. In Middle Eastern and Asian countries, the disease affects more men than women. In the United States, it affects more women than men. Lucky me, I am one of those women in the United States. To my knowledge I do not have a Middle Eastern background. My family heritage is American, Austrian, German, French, Welsh, and English. It blows my mind how this disease knows geographical boundaries and sex differences.

Behçets disease tends to develop in people in their 20's or 30's, but people of all ages can develop this disease. I can trace back symptoms to childhood, but I wasn't diagnosed until I was 40 years old after having a heart attack. And even then it was a long and difficult path to get to the bottom of what was causing all of my problems.

The exact cause of Behçets disease is unknown. Most symptoms of the disease are caused by vasculitis (an 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. After having angioplasty it was discovered my arteries were FOUR times their normal size due to the inflammation.

Doctors think that an autoimmune reaction may cause the blood vessels to become inflamed, but they do not know what triggers this reaction. Under normal conditions, the immune system protects the body from diseases and infections by killing harmful "foreign" substances, such as germs, that enter the body. In an autoimmune reaction, the immune system mistakenly attacks and harms the body's own tissues. Behçets disease is not contagious; it is not spread from one person to another. Behçets disease affects each person differently. The four most common symptoms are mouth sores, genital sores, inflammation inside of the eye, and skin problems. Inflammation inside of the eye (uveitis, retinitis, and iritis) occurs in more than half of those with Behçets Disease and can cause blurred vision, pain, and redness. Thankfully at this point, in regards to my eyes I only deal with constant dry eye syndrome and conjunctivitis that can be very difficult to get back under control.

Other symptoms may include arthritis, blood clots, and inflammation in the central nervous system and digestive organs. Behce’s Disease has the ability to involve blood vessels of nearly all sizes and types, ranging from small arteries to large ones, and involving veins as well as arteries. Because of the diversity of blood vessels it affects, manifestations of Behcets may occur at many sites throughout the body. I struggle with arthritis in my fingers, knees, hips, and lower back. The arthritis in the back has been so bad that I have spent time in a wheelchair. Currently I do use an electric cart when I am in the large supermarkets, especially if it is the end of the day. Overwhelming fatigue is a major battle for me.

Another huge issue for me is how it affects my brain and language skills. Doing this blog is a big risk taking adventure for me. Thankfully Tina and a couple of other friends do edit for me, but I live in fear of making a fool of myself. Before my heart attack I was an award winning teacher and took pride in my professionalism. Now I live in a world where "brain fog" is an every day word for me. Sometimes what comes out of my mouth or my writing is nothing but gibberish. Sometimes I substitute words that have no relation to what I am saying. Other times things don't make it from my short term memory into my long term memory. My children will often say to me, "You've already asked me that 3 times in the last 10 minutes. " Or my friends will say, "We've been over this three times." And I hear the exasperation in their voice. I'd give anything to remember, but in my mind it's like hearing it for the first time. And yet people look at me like I am faking my illness....because I look good on the outside. Some days I wish my body was transparent, so people could see my blood vessels are really inflamed.



Mamawheelie said...

Oh dear! While I'm not familiar with your illness, I understand about the reaction from people. I'm fairly certain (no diagnosis yet) that I have Fibromyalgia, and the reaction from most people seems to be skepticism. And because of their lack of understanding, they tend to think this disorder is a form of hypochondria, and I've frequently been called a "wuss" because I'm very sensitive to pain, and to things that in others wouldn't cause pain, but does to me. (Like tickling or gentle massages for instance.) *warm thoughts*

Elizabeth said...

Mamawheelie, I certainly understand the being very sensative to pain. Tickling is painful for me also. My ex wanted to massage my back all the time and he was very rough and couldn't understand why I didn't want to be touched.

Amy said...

Oh my goodness we have so many things I can relate too! I have RA and Fibryo and have commented so many times that I wish people could see from the outside how badly I'm hurting inside. In regards to your other post about being a survivor I too am a survivor - of incest for many years and had to deal with that when I hit my 30's. And like you others have said I should write a book! I would love to stay in touch with you! Amy S.

Elizabeth said...

Amy, I am so sorry. I just got your post and it looks like it has been several months. Unfortunately it looks like it has been lost in technology world. I am so sorry for everything you have been through.
Please keep in touch and let me know how you are doing!