I’d like to raise more awareness and talk about a condition I suffer from, called Behcets Disease. I was 50/50 diagnosed in January of this year (2017) and then 100% diagnosed just last month by my Rheumatologist, by getting a pathergy test (which involves pricking your skin with a needle to see if a particular red spot appears within the next day or two), blood tests and a physical examination along side going through my medical history including looking at MRI scans.
I bet you are thinking “What the heck is ‘Behcets Disease‘?” I wondered the same when it was first mentioned! And it took months of research- asking Doctors, Consultants and one of my best friends (who also suffers from it) before I fully understood the complexity and extent of the condition.
Behcets Disease is more common in Far East, the Middle East and Mediterranean countries such as Turkey, Iran and Israel, people of Mediterranean, Middle Eastern and Asian backgrounds can also develop the condition, although it can affect all ethnic groups. The causes of Behcet’s disease is still unknown, although experts believe it’s an auto inflammatory condition, and varies from it being passed through gene’s in the family or environmental factors. It’s more common for people age 20 to 30 years of age to develop symptoms, and the condition is more rare in children and elderly. For me, I fit in neither of these categories which makes it difficult to know where i got it from! It affects approximately 3-5/100,000 in America but the number of people affected in the UK is still unknown as it is so rare. Behcets Disease is also known as a type of Vasculitis, meaning not only is it an auto immune disorder but it is also a blood disorder. So now to answer your next question- an auto inflammatory condition is where the immune system (the body’s natural defense against infection and illness) attacks healthy tissue in your body.
So what are the symptoms and additional contributions?
Symptoms can vary from person to person who suffer but generally speaking these are the following symptoms: genital and mouth ulcers, red/painful eyes and blurred vision, acne-like spots, headaches, painful/stiff and swollen joints, skin lesions (any unusual growths or abnormalities that develop on the skin) and pathergy also known as hypersensitive skin.
Now these don’t seem to bad, right? In all fairness reading it in this blog, it doesn’t really seem much of a big deal. The main problem (for me) is due to my other illness (Crohn’s Disease) I am in hospital quite often and have cannula’s, blood tests and injections frequently. Behcets Disease causes cannula’s to tissue so quickly, needle sites become swollen, bruised and red (which hurts like mad!) and my veins aren’t too great because of the condition making them collapse and narrow. It can be really frustrating because they will send person after person in to cannulate me so when they do eventually get one in, it tissues in no time (grr!) The additional issues that this condition can cause are quite superior, prior to symptoms (if left untreated or treatment doesn’t work) such as; Permanent vision loss, strokes, blood clots, Aneurysms, Gastrointestinal issues and it affects the body’s nervous system.
What Treatments are Available?
With most auto immune diseases, immuno suppressants (reducing the immune system) are used along with steroids (which are anti-inflammatory) or biological treatment (which focus on the process of inflammation in the body.) Obviously with these treatments come side affects, which let’s face it, aren’t great. However we must take the good with the bad and deal with it best as we can. I also find it important to ask for emotional support from your GP too, such as counselling if you feel that you need it and it’s nice to have someone to talk to from time to time.
The most frustrating part about being diagnosed with a complex condition is that it is so rare, most healthcare professionals know little or nothing about it. But not all hope is lost!, there are a few options to get support and help such as ; a support group online called the ‘Behcets Syndrome Society‘ to help those who suffer (To visit their website please click here) there are also many Facebook groups (which are closed or private) that you can request to join, which you can find by searching “Behcets Disease Society“and last but not least.. there are three (yep only three!) specialist hospitals in England which specialise in Behcets Disease, which are located in London, Birmingham and Liverpool. Not so handy if like me, you live in Scotland however at least we do have those hospitals in the UK!
I would really like to emphasise how little awareness there is about Behcets Disease and that there are so many people and professionals who don’t know what it is. Friends, family and people online often ask me what it is and i feel that writing this piece may just answer their questions and help to gain knowledge. After all, it’s about understanding and helping those around you, help you.
Hello there is a specialist in Addenbrook Hospital in Cambridge he is called Dr Jayne and by all accounts is excellent,
That’s great thankyou so much, just getting the referral that is proving difficult at the moment!
I have Behcets since march 2010… youngest in ireland and worst case. I have had double hip replacenent from this over been test bunny here…. im in pain morning to nite never stops… i plead with anyone on steriods please be careful as i was pumped betweem 10—15 a day for years never put on bone protection never brought up to me ever… at least ye have places to go and meet real doctors. Here they just use u i had to learn to walk again and need it all done again.
that’s awful i am truly sorry you have experienced this Linda!