Behcet’s Vasculitis Awareness

Today is international Behcet’s Disease Awareness Day. Behcet's is a rare disease that affects the small blood vessels as a form of Vasculitis.

My Behcet’s disease is one reason I do not often talk about my treatment plan. Because I have both this rare disease and Myalgic Encephalomyelitis or MECFS it is often difficult to know what symptoms are caused by what disease and what treatments are helping each disease.

In particular, my Behcet’s has manifested in strange neurological disease with flares that mimic stroke and seizure. Because of this we believe I may have neuro Behcet's a form of Behcet's disease affecting 1 in 10 patients with Behcet's that can manifest in a wide range of neurological and sometimes psychiatric symptoms.

Both Behcet's and ME involve difficulty with perfusion in the brain leading to brain fog and cognitive issues. I strongly believe that by studying rare diseases like Behcet's, we can learn more about less understood biological phenomenon which in turn helps not only rare disease patients but all chronic illness patients.

While Behcet's disease is rare, it is also likely underdiagnosed. It is important for clinicians to be aware of rare diseases, especially those like Behcet's which are diagnosed clinically. The international diagnostic criteria for Behcet's is:

-Recurrent mouth ulcers (at least 3 times per year)

AND

Any two of:

-Recurrent genital ulcers

-Eye lesions

-Skin lesions

-Positive pathergy test

But while these are the diagnostic markers, it is important to note that organ involvement including kidneys, rheumatic disease and neurological disease are often the primary quality of life issues for those with Behcet's. Wherever blood flows Behcet's goes. Every patient is different and it is important that clinicians understand the underlying mechanism of small blood vessel vasculitis as opposed to viewing the condition as a set of checkboxes.

The best part of my diagnosis as a Behçet's warrior has been the amazing community. They taught me so much about how to manage my disease and about advocating for myself. If you have Behcet's Disease I strongly recommend joining Facebook groups and connecting with others.