The story of Judy
Hi! My name is Judy and I have Behcet’s Disease: a type of vasculitis (blood vessel inflammation) common among Silk Road countries and the Middle East (mostly Turkey, Israel, Iran, and North Africa). Basically, my immune system enjoys attacking blood vessels of all sizes, anywhere in the body. Wherever blood flows, Behcet’s goes.
It took me four years, 15 different doctors, and dozens of misdiagnoses to reach my diagnosis. Every single day, I have to advocate for myself, educating my own doctors about this extremely rare disease, as a majority of them learned about it for maybe 30 minutes in med school. And it’s tiring. My Behcet’s community and I are desperate for more #equitable treatment options, access to knowledgeable medical professionals, awareness, and RESEARCH! I’m confident that I’ll eventually reach remission, but in order to do so, I need your help in spreading awareness. Despite Behcet’s trying to get me down, I continue to thrive professionally and I remain optimistic. I also enjoy making fun of the crazy situations Behcet’s brings about.
Behcet’s and I have a love-hate relationship. It’s affected every single aspect of my life – social, professional, personal, and even my day-to-day activities. The lack of knowledge of this disease among medical professionals and my lengthy four-year diagnosis process led those who surrounded me – friends, family, and colleagues – to believe that I was just exaggerating or making everything up prior to my diagnosis.
Living with a rare disease can be tremendously isolating. At first, I didn’t know anyone else with this Behcet’s. But, I soon found a warm and welcoming community eager to share their knowledge and experiences…and to remind me that I’m never alone.
Lastly, having Behcet’s has taught me:
1. Not to get worked up about things that out of my control.
2. Enjoy the little things, like days that I’m able to walk for more than five minutes.
3. How to set realistic boundaries and goals.
4. Self-care is VERY important.