Still wondering what Behcet’s Disease is? Well, Wikipedia is a good start…and a first choice for a lot of research choices, but as a gal with the disease, I can’t help but notice that the article itself seems very stale and technical. Here’s what you’re missing out on by not talking to the spoonie herself.
- Those mucocutaneous ulcerations don’t scar.
FALSE: Sorry kids. Those ulcers that pop up in your mouth, throat, and nether regions DO leave scars. Wikipedia says that those painful oral mucocutaneous ulcerations won’t leave a scar, but my body says differently. I’ve always had large tonsils and frequent strep, but since my ulcers have been identified as Behcet’s, they seem to have the docs noticing lighter discoloration on my tonsils. For the most part, the ulcers flatten out and don’t leave anything raised, but if you have them on your external skin, they might look similar to the scar of a pimple you picked too much.
- Not everyone gets optic involvement/uveitis.
TRUE: Again, I’m using myself as an example. In 2012 I was in a very bad car accident. I was on my way to job training 3 hours away from my house and I ended up colliding with a guy who ran a red light. My car was totaled. Worse than that, I had locked my body and suffered migraines for weeks. I started noticing that my vision seemed to be worse than before and ended up with my first pair of glasses. Now, since I wasn’t diagnosed with Behcet’s until 2014 (and hadn’t really had any of the aforementioned ulcers), I chalked it up to the accident. I get my eyes checked once a year by an ophthalmologist and my vision declines slightly each time, but never any other cause for concern. I specifically ask to check for signs of uveitis and structure of the retina and have had all good exams. So, you do not have to have optic involvement with Behcet’s Disease.
- It’s probably not IBS, but BD all along.
MAYBE: Irritable Bowel Syndrome is a fickle one. There are numerous things that can cause IBS or IBS like symptoms. Everything from diet to other diagnoses. My gastrointerologist can’t really tell the cause of mine. I remember talking to my doctor about it as a teenager about my symptoms and she quickly labeled it IBS, but no treatment we ever tried really helped it. Even now, there’s really not much that helps it. Especially since mine can be triggered by migraines…even silent ones…and flares. The official chart reads “idiopathic”, but common sense tells you that if an issue correlates with symptoms of your autoimmune disease, then it’s probably related.
Read More: Diagnostic Criteria for Behcet’s Disease
- Organic brain syndrome? Is that why I am always losing my train of…oh, fuck. I forgot.
TRUE: Brain fog is real, and it really happens with Behcet’s. It’s fair to say that sometimes it’s attributed to our medications, but I definitely have memory issues. Funny/maybe not funny story. When I get into a fight with my boyfriend (a minor one), he will say we should forgive for the night and just pick it up in the morning. It took me months to realize that he figured out that my brain would reset overnight and there was a good chance I’d forget all about our little tiff by the morning. Sneaky.
Practically though, this is why I am now heavily reliant on mobile apps, notepads and my absolute favorite, neon Post-Its. As I sit at the computer, I have my iPad up with Evernote, my Google Calendar and three Post-Its stuck directly in my face to remind me of what’s on my Wunderlist, but has to be done in a quick fashion. This latest pack of gems were on clearance at Target, and Partner didn’t bat an eye when I snatched up every last one.
Memory loss can also be attributed to mental disorders too. I recently underwent neurocognitive testing, a five hour process where your brain is exercised to the extreme. The main findings for me were that my memory loss could also be attributed to anxiety and insomnia/poor sleep.
- It’s not so rare to have additional diagnoses along with Behcet’s Disease.
TRUE: I know many a Behcet’s Warrior with multiple diagnoses. It’s not uncommon (in our not so common community) to see diagnoses for things like Sjogrens Syndrome, POTS, dysautonomia, and mental illness.
Myself, I have Behcet’s Disease, Bipolar Depression, Generalized Anxiety Disorder, Attention Defecit Disorder without Hyperactivity, Insomnia, IBS, Chronic Strep Throat, Chronic UTI, Fibromyalgia, Transient Ischemic Attacks (mini strokes), Complex Migraines, Silent Migraines, Idiopathic Tears of the Orthopedic Tendons…just to name a few. So, it’s safe to say that if you have one diagnosis, you’ll have a few more.
- Testing for HLA-B27 and HLA-B51 genetic markers can tell you if you definitively have Behcet’s Disease.
FALSE: Behcet’s is a fickle pickle. It’s really diagnosed by an elimination process. The first step is your doctor acknowledging that you have some of the “textbook” symptoms and then running A LOT of tests to eliminate things like lupus, herpes, Chrohn’s, etc. Some Warriors are positive for one or both of the genetic markers, though.
Behcet’s is a traditionally Mediterranean disease, so if you have that type of ancestry, you’re more likely to carry these genetic markers. I was negative for both markers, which was slightly comforting to me because I know that reduces the chance of my children having the disease passed down to them. This also is good news for my married sister, because when she’s ready to start making me an auntie, she won’t have to worry about paying for the additional genetic testing. This does not, however, mean that our kids are automatically in the clear. We’d need additional testing for common genetic disorders to be certain.
- If you had strep a lot as a kid, it might have caused your BD.
TRUE: Yep! This is research that is trying to find the link to how people like me, negative for the genetic markers, might have contracted the disease. There are several ongoing studies that are linking Streptococcus, the bacterium that causes strep throat to Behcet’s Disease. Many people with Behcet’s disease have had several strep infections. In addition, researchers suspect that herpes virus type 1, a virus that causes cold sores, may be associated with Behcet’s disease. So, while you may have had to prove to your doctor that you did not, in fact, have the STD herpes when you started your diagnostic process, there’s a chance their guess wasn’t as insulting as we once thought.
- Pathergy tests are always sure indicators of Behcet’s Disease.
FALSE: For those not in the know, a pathergy test is where your doctor takes a needle, pokes it into your skin, rotates it 90-180 degrees and then has you come back in 24-48 hours to see if your skin got angry and produced a pustule.
Many Behcet’s Warriors have skin symptoms, but this is just another test that doesn’t hold water in the diagnostic process. It has the highest percentage of failure in American and European patients. I was one of those failures. I actually brought photos of a reaction I had to acupuncture into my doctor, and she based a positive pathergy reaction on that. The acupuncture was something I had before, but never had a reaction until this time. I was left with a lovely line of red puffy bumps across my lower back and a few blobby, rash like pustules below my belly button.
What other information do you feel is “common” with Behcet’s, but not always true?
May is International Behcet’s Awareness Month, with Awareness Day on May 20th. If you’d like to know more about Behcet’s Disease, visit the American Behcet’s Disease Awareness site at http://www.behcets.com or the National Institute of Health’s Behcet’s Page HERE.