VEXAS
Understanding VEXAS Syndrome
VEXAS syndrome is a recently identified, rare, and severe hemato-inflammatory condition characterized by a unique set of symptoms, including recurrent fevers, inflammation of cartilage, skin rashes, and blood abnormalities. This syndrome primarily affects middle-aged and older men, leading to significant morbidity due to its systemic nature. VEXAS stands for Vacuoles, E1 enzyme, X-linked, Autoinflammatory and Somatic. Symptoms can be diverse and impact various organs, including the skin, cartilage, lungs, joints and blood vessels, making it a complex and challenging condition to diagnose and treat.
University of Maryland VEXAS Syndrome Program
At the University of Maryland in Baltimore, we have established a specialized clinical program dedicated to helping patients manage and improve their condition. Our multidisciplinary team, consisting of experts in rheumatology, hematology, and other relevant specialties, provides comprehensive care tailored to each patient's unique needs. Our focus is on alleviating symptoms, improving quality of life, and offering the best possible treatments and supportive care.
Advancing Understanding and Treatment of VEXAS Syndrome
The underlying mechanisms of VEXAS syndrome are still being explored. Institutions and experts, including David Beck at NYU, the NIH program, and the Mayo Clinic in the United States, are at the forefront of this research. Additionally, an international network is developing tools and guidelines to assist physicians in managing this complex condition. Dr. Marcela Ferrada, one of the world-renowned experts on VEXAS, is among the leaders collaborating in these efforts. We are honored to contribute to this vital research and advance our understanding of VEXAS syndrome.
Although our program is newly initiated, we are deeply committed to advancing research to better understand the natural history and long-term complications of VEXAS syndrome. We are actively seeking the necessary resources to support our research initiatives. Our efforts include expanding our understanding of the disease, improving diagnostic methods, and developing more effective treatments. By collaborating with world-renowned experts and institutions, we ensure that our patients benefit from the latest discoveries and therapeutic strategies.
How to Test for VEXAS?
Genomic Testing Cooperative (GTC)
Support
For Patients
Patients with VEXAS syndrome have created a supportive community through a Facebook group. Additionally, the VEXAS Global Foundation was recently established to support patients, increase awareness, promote research, and foster a sense of community.
Programs in the United States Evaluating Patients with VEXAS:
- NIAMS: Peter Grayson, MD, MSc
- NYU Langone: David D. Beck, MD, PhD
- Mayo Clinic: Vasculitis - Symptoms & Causes
For Physicians
The International VEXAS Network is working on creating resources for physicians. Stay tuned!