In my experience, when a patient is told they have Behçet’s Disease, they often feel relieved. They may have been having symptoms for years without knowing what was wrong. We discuss next steps, and we work together to create a plan. I tell them that Behçet’s Disease is an inflammatory disorder, and that helps because many patients have an idea of what inflammation is.
Professor of Medicine Mayo Clinic College of Medicine and Science Consultant, Mayo Clinic Florida
Behçet’s Disease differs from many other rare diseases. There is no blood or imaging test available to confirm a diagnosis of Behçet’s Disease, and the diagnosis is based on clinical manifestations. With the exception of the oral ulcers, the initial manifestation can vary significantly from patient to patient and also depending on geographic location. While we don’t know what causes Behçet’s Disease, it is interesting that there seems to be both genetic and environmental factors at work.
Clinical Associate Professor of Medicine New York University School of Medicine
The different manifestations of Behçet’s Disease can affect the physical and mental health of patients, ultimately impacting quality of life (QoL). Mucocutaneous lesions are the hallmark of Behçet’s Disease. Oral ulcers are the most common onset manifestation and contribute substantially to diminished QoL as a result of their debilitating impact on daily functions such as chewing, swallowing, and speaking.1-5
People with Behçet’s Disease experience significantly impaired QoL3,4,6*
Quality of life is impacted by the type and number of symptoms as well as disease activity3
*Across multiple measures of QoL, including SF-36, WHO-QOL100, and EQ-5D.3,4,6
I try keeping track of my own symptoms, and I try to log it into a book. Then when I go to the doctor, I have a list of questions. I also take a lot of photographs. If I have a skin lesion or an oral ulcer, I’ll have a photograph to show the doctor when I go to my appointment because it may not be there the day you have your appointment.
Belinda, a patient diagnosed
with Behçet’s Disease
If you suspect a patient may have Behçet’s, consider a rheumatology consult.
Download information on how to recognize Behçet’s Disease here.
Help raise awareness of the challenges of Behçet’s Disease and reduce the delay in diagnosis
The quality of life for people with Behçet’s Disease can be quite poor, with manifestations that involve multiple organ systems and disrupt everyday activities.2,3,6,7 Sharing the below information via social media will help raise awareness of Behçet’s Disease and may even prevent a delay in its diagnosis.
1. Kural-Seyahi E, Fresko I, Seyahi N, et al. The long-term mortality and morbidity of Behçet Syndrome. A 2-decade outcome survey of 387 patients followed at a dedicated center. Medicine. 2003;82(1):60-76.
2. Senusi A, Higgins S, Fortune F. The influence of oral health and psycho-social well-being on clinical outcomes in Behçet’s disease. Rheum Int. 2018;38(10):1873-1883.
3. Canpolat Ö, Yurtsever S. The quality of life in patients with Behçet’s Disease. Asian Nurs Res (Korean Soc Nurs Sci). 2011;5(4):229-235.
4. Ertam I, Kitapcioglu G, Aksu K, et al. Quality of Life and its relation with disease severity in Behçet’s disease. Clin Exp Rheumatol. 2009:27(suppl 53):S18-S22.
5. Mumcu G, Inanc N, Ergun T, et al. Oral health related quality of life is affected by disease activity in Behçet’s disease. Oral Dis. 2006;12:145-151.
6. Bernabé E, Marcenes W, Mather J, Phillips C, Fortune F. Impact of Behçet’s syndrome on health-related quality of life: influence of the type and number of symptoms. Rheumatology (Oxford). 2010;49:2165-2171.
7. Barnes CG. History and diagnosis. In: Yazıcı Y, Yazıcı H, eds. Behçet’s Syndrome. New York, NY: Springer; 2010:7-34.