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Share Your Personal Journey
with Behçet’s Disease

From diagnosis to daily life, each person’s experience with Behçet’s Disease is different. Create a personalized infographic by answering a brief questionnaire about your journey as a patient or caregiver of a loved one with Behçet’s Disease. Then help raise awareness by sharing your personal journey with Behçet’s Disease on social media using #myBehcetsJourney.


Understand Behçet’s Disease

Physician Perspective on Behçet’s Disease

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.


— Kenneth T. Calamia, MD

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.


— Yusuf Yazici, MD

Clinical Associate Professor of Medicine
New York University School of Medicine

Explore the Clinical Understanding of Behçet's Disease

Delfin Santos, MD, Director of the Rochester Rheumatology Center in Rochester Hills, Michigan Please view Chapter 1 to unlock Chapters 2 and 3
Unlock Chapters 2 and 3 by first viewing Chapter 1
Chapter 1 Icon
Chapter 1: Overview and Clinical Features of Behçet's Disease
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Chapter 2: Epidemiology of Behçet's Disease and Risk Factors
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Chapter 3: Recognizing and Diagnosing Behçet's Disease

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People Living with Behçet’s Disease

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

Clinical symptoms of Behçet’s Disease may also have a
psychological impact on patients1

  • Low self-esteem
  • Negative effect on body image due to scarring
  • Pain in the body may cause depression, anxiety, fear, tension, and loss of concentration
  • Negative effect on sexual function
  • Negative effect on social relationships
  • Difficulty in fulfilling roles and obligations due to pain in the body and limitation of daily activities

People with Behçet’s Disease experience
significantly impaired QoL1,*






Problems with Mobility


Problems Performing Usual Activities


Sleep Disturbances

Quality of life is impacted by the type and number of symptoms as well as disease activity1

*Across multiple measures of QoL, including SF-36, WHO-QoL-100, and EQ-5D.

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.



A patient diagnosed
with Behçet’s Disease

If you suspect a patient may have Behçet’s Disease, consider a rheumatology consult

Download information on how to recognize Behçet’s Disease here.

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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. The manifestations can involve multiple organ systems and can disrupt everyday activities.1 Sharing the below information via social media will help raise awareness of Behçet’s Disease and may even prevent a delay in its diagnosis.

Share to Raise Awareness



1. Canpolat Ö, Yurtsever S. Asian Nurs Res (Korean Soc Nurs Sci). 2011;5(4):229-235.

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