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#BehcetsConnection

Resources

Organizations and Websites

The American Behcet’s Disease Association (ABDA) supports, educates, and empowers the Behçet’s community, while continuously advocating for better research diagnostics, treatment, and a cure.

The ABDA website offers a wide range of information specific to Behçet’s Disease.

Visit ABDA at: behcets.com

The National Organization for Rare Disorders (NORD) is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.

The NORD website provides extensive information on a large number of rare diseases, including Behçet’s Disease.

Visit NORD at: rarediseases.org

The Vasculitis Foundation is a membership-based organization of patients with vasculitis, caregivers, friends, family, physicians, and researchers advocating for early diagnosis, better treatments, and improving quality of life for patients with vasculitis, including Behçet’s Disease.

Visit: vasculitisfoundation.org

Hosted by trusted patient advocates, RareConnect is a place where rare disease patients can connect with others globally.

Visit: rareconnect.org

Clinical Resources

considering_behcets_disease_download

Recognizing Behçet’s Disease

Tips and information for when you suspect Behçet’s Disease

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What is Behçet’s Disease?

A brief overview of Behçet’s Disease for newly diagnosed patients

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Manifestations of Behçet's Disease

The most common manifestation of Behçet's Disease is mucocutaneous lesions accompanied by lesions in other organ systems.

Images of Behçet’s disease manifestations

Major-type Oral aphthous ulcer

Major aphthous oral ulcers occur as one to ten very painful ulcers with diameters of 10 to 30 mm. They usually last for up to 6 weeks, and about 64% heal with scarring. They are most often found on the lips, tongue, and buccal mucosa, but they also affect the pharynx, palate, and tonsils.

References: 1. Lee S, Bang D, Lee E-S, Sohn S, eds. Behçet's Disease: A Guide to Its Clinical Understanding. Springer-Verlag; 2001:19-50. 2. Barnes CG. History and diagnosis. In: Yazici Y, Yazici H, eds. Behçet's Syndrome. Springer; 2010:7-33.

hypopyon-panuveitis

Hypopyon Panuveitis

The presence of a hypopyon in the eye is associated with a severe panuveitis in the majority of instances. It is seen in around 6-12% of patients with ocular involvement.

Barnes CG. In: Yazici Y, Yazici H, eds. Behçet's Syndrome. Springer; 2010:7-33.

Scrotal ulcer healing with scarring

90% of large genital ulcers (most commonly found on the scrotum in males) that are ≥1 cm in diameter usually lead to scarring.

Barnes CG. In: Yazici Y, Yazici H, eds. Behçet's Syndrome. Springer; 2010:7-33.

4_scrotalUlcer_0003_4-Scrotal-ulcer

Scrotal Ulcer

In males, 89% of genital ulcers appear on the scrotum. They usually begin as a papule, pustule, or circumscribed necrosis that ulcerates within a short period of time. They are frequently painful, round to oval, punched out in appearance, and usually covered with yellowish fibrin or crust with regular and edematous borders.

Barnes CG. In: Yazici Y, Yazici H, eds. Behçet's Syndrome. Springer; 2010:7-33.

acneiform-skin-lesion

Acneiform Skin Lesion

Acneiform lesions are a frequent skin manifestation of Behçet’s Disease prevalent in 30-96% of patients. They present as inflammatory papules, pustules, nodules, and noninflammatory comedones not atypical from acne vulgaris but frequently involve the extremities in Behçet’s Disease.

Barnes CG. In: Yazici Y, Yazici H, eds. Behçet's Syndrome. Springer; 2010:7-33.

erythema-nodosum

erythema nodosum

Observed in up to 50% of patients, erythema nodosum–like lesions are characterized by the presence of red, tender, erythematous non-ulcerating nodules that are 1-5 cm in diameter and symmetrical in distribution. They are frequently found in the lower extremities such as buttocks, lower part of the thighs, and ankles.

Barnes CG. In: Yazici Y, Yazici H, eds. Behçet's Syndrome. Springer; 2010:7-33.

herpetiform-oral-aphthous-ulcers

herpetiform oral aphthous ulcers

These ulcers are made up of recurrent crops of up to 100 small, painful ulcers measuring 1-2 mm in diameter that can join to form larger lesions. They usually last for 7-10 days and about 32% heal with scarring.

Lee S, Bang D, Lee E-S, Sohn S, eds. Behçet's Disease: A Guide to Its Clinical Understanding. Springer-Verlag; 2001:19-50.

minor-type-oral-aphthous-ulcers

minor-type oral aphthous ulcers

Minor aphthous oral ulcers have a diameter of less than 10 mm and usually appear in clusters of one to five small, moderately painful ulcers which last for 4 to 14 days. Only about 8% of these types of ulcers leave scars.

Lee S, Bang D, Lee E-S, Sohn S, eds. Behçet's Disease: A Guide to Its Clinical Understanding. Springer-Verlag; 2001:19-50.

Working to make a difference in behçet's disease

In Behçet's Disease, every patient's experience is different

See what advocates have to say about raising awareness for Behçet's Disease and helping bring more resources to patients in need.

Video Transcript

[SUPER]
Ashley
Person living with Behçet’s Disease

ASHLEY: Three words I would use to describe Behçet’s Disease are unpredictable, grueling, and fierce.

DR. YAZICI: Frustrating.

ROCHELL: Exhausting.

Misunderstood.

DR. CALAMIA: Variable.

DR. BARRIENTOS: Struggle.

CATHY: Mystifying.

DR. MAHR: Under recognized.

[SUPER]
Kenneth Calamia, MD
Consultant, Rheumatology, Mayo Clinic Florida
Professor of Medicine, Mayo Clinic School of Medicine and Science

DR. CALAMIA: Behçet’s Disease is a disease of unknown cause. A rather uncommon disease, especially in the United States and in Western countries.

[SUPER]
Cathy Ferrone
Advocacy Relations Director, Amgen

CATHY: Symptoms fluctuate from day to day, year to year, and from patient to patient.

[SUPER]
Yusef Yazici, MD
Clinical Associate Professor, Department of Medicine, New York University

DR. YAZICI: Behçet’s is not fully understood, physicians usually misdiagnose it.

[SUPER]
Franco Barrientos, MD
American Behçet’s Disease Association

DR. BARRIENTOS: It could take up to three years to diagnose it, even more.

[SUPER]
Rochell
Person living with Behçet’s Disease

ROCHELL: I had initially been diagnosed with lupus for a full year. They then thought that I had MS.

ASHLEY: No one could understand why a 19-year-old girl could be so sick. My bloodwork would always turn out normal.

DR. YAZICI: Most commonly, patients see four to five physicians before they are even considering Behçet’s as a possible diagnosis, and they’ve lost precious time.

[SUPER]
Alfred Mahr, MD, PhD
Professor of Internal Medicine and Chief of the Division of Internal Medicine, Hospital Saint-Louis

DR. MAHR: The most distressing symptom in Behçet’s, just because it’s so common, is mucocutaneous disease, especially oral ulcers. The pain, the fact that it affects speaking, eating…

ROCHELL: My family has had to adapt to my slower pace, which is very hard for me because normally I would leave them in the dust.

ASHLEY: Socially, I can’t keep up with the people my age.

DR. YAZICI: One of the main issues in Behçet’s management is that we don’t have adequate resources, neither for the patients nor for the doctors.

DR. CALAMIA: Behçet’s is not a hopeless condition and I think there’s a lot of reasons for patients to have hope.

[SUPER]
For more information, visit www.behcetsconnection.com

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Resources for Your Patients with Behçet’s Disease

The Vasculitis Pregnancy Registry collects information on the reproductive health of women with vasculitis who become pregnant. Online surveys assess a) vasculitis severity and pregnancy-related experiences and b) pregnancy outcomes.

Visit V-PREG at: vpprn.org

The Vasculitis Patient-Powered Research Network works to improve the health of patients with vasculitis. Studies directly engage investigators, caregivers, and health systems to advance the medical knowledge and care of vasculitis.

Visit VPPRN at: vpprn.org

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