May has been designated Behçet’s disease awareness month – but unlike so many of the rare diseases we cover, there are not any advocacy organizations dedicated to raising awareness and support for those with Behçet’s.

Patient Worthy to the rescue!

It is diseases like these that require our attention the most.

So, what is Behçet’s disease?

Behçet’s disease, also known as Behçet’s syndrome, is a chronic condition that causes chronic inflammation, manifesting as ulcers (or canker sores). These ulcers most often appear in the mouth and genitals. Inflammation also commonly affects the eye and skin. Sometimes, this inflammation attacks the joints, and, in rare cases, the digestive system, brain, and/or spinal cord.

While Behcet’s disease is rare in the United States, it is less uncommon in East Asian and Middle Eastern countries, such as Japan, China, Turkey, Iran, and more.

No one knows exactly what causes Behcet’s disease, but it’s likely that genetic and environmental factors play a role. Some researchers believe a virus or bacterium may trigger the disease in people who have certain genes that make them susceptible.

Currently, no cure exists. Your medical team may work to control signs and symptoms experienced during flares with medications such as topical corticosteroid medicines, special mouthwashes and eyedrops.

To learn more about Behcet’s, please visit the American Behcet’s Association (ABA). The ABA was established in 1978 by Sheila Gregory, the mother of a young Behcet’s patient, and their mission is to support, educate, and empower the Behcet’s community, while advocating for better research, diagnostics, treatment and a cure.

What are your thoughts on building community for rare disease patients? Share your stories, thoughts, and hopes with the Patient Worthy community!