Most people have never heard of Behçet’s disease a painful, chronic condition that causes sores in the mouth and elsewhere on the body. Since only 16,000 to 20,000 people in the United States are affected by this condition, that’s hardly surprising. But for those suffering in silence, it’s important to know that, while there is no cure, diagnosis and treatment can help manage symptoms.
The diagnosis is based on the combination of clinical findings, and most doctor may not be very familiar with the condition and its symptoms as it is so uncommon in the United States many patients face significant delays in getting properly diagnosed and treated. One study suggested an average of nearly three years to diagnosis for patients with Behçet’s disease.
Knowing the signs and symptoms is essential to managing the disease. As part of this year’s Behçet’s Disease Awareness Day (May 20), we’re highlighting the five most common signs and symptoms that may develop as the disease progresses, with the hope that more patients can take control of their condition by talking to their doctor and getting treated as soon as possible.
Mouth sores are often the first sign of Behçet’s and occur in almost everyone with the disease. These painful ulcers, which can appear anywhere in the mouth, including the lips, tongue and cheek lining, look like common canker sores but can be far more abundant. Patients have reported dealing with multiple mouth ulcers at a time. Not surprisingly, they can make eating, drinking and even speaking difficult. These sores usually heal within a week or two without scarring but often return.
Appearing in about 75 percent of people with Behçet’s disease, genital sores can occur almost anywhere in the groin area. These painful ulcers tend to be larger and deeper than mouth sores and, as a result, can lead to scarring. These sores will typically heal within two to four weeks but recur. While genital sores are not contagious, they can make sexual intercourse painful. Doctors can misdiagnose genital sores associated with Behçet’s disease as herpes.
Between 60 and 90 percent of people with Behçet’s disease experience skin lesions beyond the mouth and genital areas. These lesions can manifest anywhere on the body as painful acne-like bumps or on the legs, arms, face and neck as red, tender nodules called erythema nodosum. These lesions typically heal within two to three weeks but, like mouth and genital ulcers, frequently return.
More than half of people with Behçet’s disease experience a condition called uveitis, an inflammation of the eye that can result in pain, redness, blurry vision and increased sensitivity to light. Eye inflammation due to Behçet’s happens more commonly in younger people and men. While eye inflammation can be the first sign of Behçet’s in some patients, it may not appear until years later for others. If left untreated, repeated recurrences can lead to vision loss or blindness.
Joint Pain and Swelling
Joint diseases such as arthritis and spondylitis affect 50 percent of patients with Behçet’s disease, resulting in pain, swelling and stiffness in the knees, ankles, wrists and elbows. Spondylitis can cause pain in the low back or buttock. Joint pain and swelling can make it difficult to move and perform everyday tasks. Although bouts of joint pain and swelling typically last about days to weeks, as with most of the common symptoms of Behçet’s, it often recurs. Permanent joint damage, however, is rare.
Beyond these five most common symptoms, Behçet’s disease can affect the brain and spinal cord, gastrointestinal tract, large blood vessels, heart, lungs and kidneys. If you have Behçet’s and are experiencing a flare up of either a recurring or new symptom, consult with your doctor.
To learn more about the need for new treatment options for Behçet’s disease, read “Behçet’s Disease: The Key to a Breakthrough Is Medical Innovation.”