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For Patient
Why is testing for VEXAS necessary?
People with VEXAS have broad symptoms, and genetic testing is the only way to identify VEXAS patients from the rest of patients with similar syndromes that hematologists, rheumatologists, or dermatologists often misdiagnose. Patients with VEXAS are diagnosed at an average age of 63 and die within 10 years of diagnosis. Compared to other patients with similar symptoms, VEXAS patients have a high rate of death. The VEXAS patients are generally not responsive to common immunosuppressive drugs and should be treated differently. Therefore, diagnosis of VEXAS is critical for more efficient therapy.
Why early detection may benefit the patients?
Early detection of VEXAS may benefit patients, because further development of VEXAS causes multiple organ damages. Early detection may lead to more efficient treatment, although there is not enough data to support this yet. However, for patients who use allogeneic hemopoietic stem cell transplants, early detection requires patients with less organ damage.
Who should be tested for VEXAS?
Although VEXAS is low in the general population, with 1 of 4000 men and 1 of 26,000 in women of people at 50 or over, VEXAS researchers strongly recommend patients with relapsed polychondritis (RP), myelodysplastic syndrome (MDS), Sweet Syndrome, or vasculitis be screened for VEXAS.
How do I know I have VEXAS syndrome?
VEXAS is a medically complicated disease that shows broad symptoms related to hematology, rheumatology, and dermatology. You can also read our blog on VEXAS syndrome.
Because patients who have these symptoms may or may not be VEXAS patients, such as patients with relapsed polychondritis (RP), myelodysplastic syndrome (MDS), Sweet Syndrome, or vasculitis, critical genetic testing for the UBA1 mutation is necessary to identify the disease.
Consult your doctors and see if you are recommended to take a VEXAS test.
What should I do if I get diagnosed with VEXAS syndrome?
If you are diagnosed with VEXAS, your doctor can give you further directions on how to treat the disease. Follow up with your doctor and take their medical treatment advice.
Can I be cured of the VEXAS disease?
Currently, there is no cure for the disease, and there are no established guidelines on how to treat the disease.
What therapies are available?
Although there are no disease treatment guidelines, doctors may provide comprehensive treatment solutions depending on your physical situation. Although there are several treatment options, the only treatment with curative intent is an allogeneic hemopoietic stem cell transplant (AHSCT).
Consult your doctors to evaluate the best treatment options for your physical situation.
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