Once your primary care physician suspects Behcet's Disease, a rheumatologist should be the next point of contact in order to confirm the diagnosis. Find a rheumatologist by visiting the American College of Rheumatology (ACR). The ACR offers a variety of trusted educational information about arthritis and other rheumatic diseases for patients and caregivers.
This information appeared in a blog post by Molly @ssd-help.org in 2019.
The severity of Behcet's Disease can be be debilitating and make it impossible for patients to work. If you have Behcet’s Disease and can’t work because of the symptoms, you can file a claim for Social Security disability benefits. The only requirements that you must meet are that you have worked in the past and that you expect that you won’t be able to work for at least 12 months.
In order to have your claim for disability benefits approved, you must be diagnosed with a condition that is listed in the SSA’s Blue Book and meet the medical requirements that have been established by the SSA. There is no listing in the Blue Book for Behcet’s because it’s relatively rare; however, you can qualify for benefits by meeting the Blue Book listing requirements for a condition that is associated with Behcet’s. Arthritis is one of the most prevalent symptoms of Behcet’s and you can be approved for disability benefits if you meet the Blue Book listing for arthritis which states that you must prove that you meet one of these standards:
You can submit medical evidence like X-rays and MRIs to prove that you meet those requirements.
You can also qualify for disability benefits through a Medical Vocational Allowance. If you don’t meet any of the Blue Book requirements or the condition you have isn’t in the Blue Book you can still be approved for benefits if your doctor fills out a Residual Functional Capacity evaluation. This allows your doctor to describe in detail how your condition makes it impossible for you to work. Submit the RFC with your medical records and claim form in order to qualify through a Medical Vocational Allowance.
You can file a claim for Social Security disability benefits online through the Social Security Administration's (SSA) website at any time as long as you have Internet access. If you’re unable to fill out the claim online yourself you can have a friend, family member, or caregiver fill it out and submit it for you.
Resources found via:
Text-to-speech (TTS) web readers may help some patients with Behcet's Disease access online reading material with more ease. Here are a few free web extensions that you may wish to add to your web browser.
For Chrome:
Speechify
Read Aloud
Read Me
The US National Library of Medicine, National Institutes of Health (NIH) is accelerating biomedical discovery and data-powered health. The NIH has a broad list of publications about Behcet's Disease (over 9500 articles) through PubMed.gov.
Joanne Zeis, an ABDA volunteer and manager of publications and patient surveys, is a Board Certified Patient Advocate who has dedicated years to helping people with chronic and rare diseases. In 2006, she received the American Medical Association's highest national award for a non-medically-trained individual, the Citation for Distinguished Service, in recognition of her strong support for the rare disease population. Behce'ts books by Joanne Zeis can be ordered online. She is the author of Behcet's Disease: My Modern Health FAQs (recipient of the 2015 National Health Information Merit Award, Patient Education), Essential Guide to Behcet's Disease, and You are Not Alone: 15 People with Behcet's.
The webinar recordings listed below are available at no charge (free!) for global, on-demand viewing thanks to the generosity of hundreds of individuals who faithfully donate to the ABDA.
*CAUTION: Please check the publication date of each webinar because medical information is ever evolving. In addition, always consult your own physician(s) before engaging in any changes to your own Behcet's treatment.
PROTECTED CONTENT AND TRANSLATIONS: Given the required accuracy and timeliness of this content, these videos may not be copied, translated, subtitled, etc., without the express written permission of the ABDA. If you would like to volunteer to create subtitles in other languages, please contact webinars@behcets.com.
February 2023
Delfin Santos, M.D. from American Arthritis and Rheumatology Associations (AARA) presents on Behcet's disease information and updates.
This webinar was made possible thanks to a grant from AmGen.
February 18, 2024
May 28, 2020
ABDA partnered with AAIDA for a Behcet's Education webinar. Featured faculty rheumatologist Delfin Santos, MD, FACR, discusses information of Behcet’s Disease, describes clinical features, differential diagnosis, management and patient care. The recording and slides are available here on YouTube.
ABDA, in partnership with AARDA and the National Coalition of Autoimmune Patient Groups (NCAPG), 40 disease-specific organizations dedicated to the health and well-being of patients.
The National Institutes of Health (NIH), a part of the U.S. Department of Health and Human Services, is the nation’s medical research agency, making important discoveries to improve health and save lives. NIH is the largest source of funding for medical research in the world. If you or a loved one has been diagnosed with a rare medical condition such as Behcet's Disease, having reliable information is critical for making informed health care decisions.
The NIH has developed guides to offer tips for finding information, resources, and services for patients. Each guide is based on common questions from users. Learn more at the NIH's Rare Diseases page.
Find out more about research and clinical trials specific to Behcet's Disease at the U.S. National Library of Medicine Clinical Trials. ClinicalTrials.gov is a registry of clinical trials. It is run by the United States National Library of Medicine at the National Institutes of Health, and is the largest clinical trials database, currently holding registrations from over 230,000 trials from 195 countries in the world.
American Academy of Ophthalmology
American Autoimmune Diseases Association (AARDA)
American College of Rheumatology (ACR)
American Foundation for the Blind
American Optometric Association
Asociación Española de Behçet
Autoinflammatory Alliance
Behcet's UK
Behcet's Turkey
Behcet yhteisö Finland
Behcet's Korea
China Behcet's Patient Association
Global Genes
HealthUnlocked
John Hopkins Vasculitis Center
Keck Graduate Institute, Claremont, California
Lighthouse International
Low Vision Information Center
National Eye Institute (NEI)
National Association for Visually Handicapped
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
National Institute of Dental and Craniofacial Research (NIDCR)
National Institute of Neurological Disorders and Stroke (NINDS)
National Institute of Health (NIH)
National Organization for Rare Disorders (NORD)