{"id":290602,"date":"2026-05-18T15:49:25","date_gmt":"2026-05-18T19:49:25","guid":{"rendered":"https:\/\/rarediseases.org\/?p=290602"},"modified":"2026-05-18T15:49:25","modified_gmt":"2026-05-18T19:49:25","slug":"guest-blog-uniting-for-behcets-disease-awareness","status":"publish","type":"post","link":"https:\/\/rarediseases.org\/es\/guest-blog-uniting-for-behcets-disease-awareness\/","title":{"rendered":"Guest Blog: Uniting for Beh\u00e7et\u2019s Disease Awareness on May 20"},"content":{"rendered":"

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By Ashley Pelletier, Executive Director of the American Behcet\u2019s Disease Association<\/em> (ABDA)<\/p>\n

On May 20, Beh\u00e7et\u2019s Disease Awareness Day, and all month long, the American Behcet\u2019s Disease Association (ABDA)<\/strong><\/a> is spreading the word about this rare, systemic, autoimmune form of vasculitis and what patients, caregivers, and doctors need to know. ABDA is hosting a number of activities to educate, raise funds, and unite the Beh\u00e7et\u2019s disease community, and there are ways for everyone to get involved\u2014starting with familiarizing yourself with the signs of this condition.<\/p>\n

What is Beh\u00e7et\u2019s Disease?<\/h2>\n

First discovered in 1937, Beh\u00e7et\u2019s is now recognized worldwide, although its epidemiology and severity vary widely. This form of vasculitis can affect all types of blood vessels, with increased risk associated when larger vessels are impacted. Symptoms include oral, genital, or skin lesions and ocular inflammation of both the anterior and posterior uveitis, resulting in blurred vision and light sensitivity. These can appear in otherwise healthy individuals. Approximately 50% of patients will experience arthritis, while 25% may have gastrointestinal ulcers. As many as 30% of patients may also have nervous system involvement, affecting the white matter of the brain and the brain stem and resulting in headaches, confusion, memory loss, and potential strokes.<\/p>\n

A chronic disease, Beh\u00e7et\u2019s may present in periodic flare-ups followed by temporary remission. It is treated by a multidisciplinary team led by rheumatologists, and treatment largely consists of symptom management to reduce discomfort. Treatment is highly individualized, and while available medications can help manage inflammation, reduce flares, and prevent complications, there is still no cure. Patients continue to face delays in diagnosis, limited awareness among providers, and a need for more research, better treatment options, and improved support.<\/p>\n

ABDA\u2019s website, behcets.com<\/strong>,<\/a> features extensive information about diagnosis and treatment, as well as guides for patients and caregivers who are navigating a new diagnosis or suspect they may have Beh\u00e7et\u2019s. Scroll down to the end of this Guest Blog for links to these resources.<\/p>\n

What is the current state of Beh\u00e7et\u2019s disease research and funding?<\/h2>\n

Companies, researchers, and investors should understand that Beh\u00e7et\u2019s remains an area of significant unmet need. There are opportunities to support improved diagnostics, better treatment development, clinical trial awareness, patient engagement, and medical education. ABDA can serve as a trusted partner and bridge to the patient community to help ensure research initiatives are grounded in real patient experiences.<\/p>\n

Demand for ABDA\u2019s patient support and educational resources continues to grow. We welcome partners who can help sustain our programs that keep patients and families informed, connected, and supported.<\/p>\n

How can I get involved on Beh\u00e7et\u2019s Disease Awareness Day?<\/h2>\n

This Beh\u00e7et\u2019s Disease Awareness Day, we invite you to be part of something bigger than a single day of recognition. Whether you are living with Beh\u00e7et\u2019s, caring for someone who is, working in rare disease, or simply learning about this condition for the first time, your voice and support matter.<\/p>\n

You can get involved by registering for ABDA\u2019s patient experience webinar and Virtual Awareness Walk, sharing educational resources, volunteering your time, telling your story, or making a donation to help sustain ABDA\u2019s programs and services. Every post shared, story told, conversation started, and dollar donated helps bring greater visibility, understanding, and hope to the Beh\u00e7et\u2019s community.<\/p>\n