I’m a patient with EGPA/Churg-Strauss vasculitis and an NIH-funded researcher blogging about vasculitis.
Why this blog?
The purpose of this blog is to share information about vasculitis. One of the most powerful ways I have found to stay on top of my vasculitis is by learning everything I can about it. This helped me when I was searching for a diagnosis and it has helped me every day since.
I am grateful to the entire vasculitis community – to patients and caregivers, patient advocacy groups, clinicians and other healthcare professionals, as well as government and industry sponsors – for their help and support for those of us affected by vasculitis.
I hope to use my background in science and medicine and my experience as a teacher to share information about vasculitis on this blog. This blog is one is way that I hope to give back to others who have helped me.
About me.
I am a biomedical researcher studying neurological disorders and viral infections of the brain, including two rare diseases. My research has been funded by the National Institutes of Health (NIH) for over twenty-five years.
I was diagnosed with EGPA/Churg-Strauss in the Fall of 2014 after about a year of persistent and worsening symptoms. Once I got serious about figuring out what was wrong with me, it took me about six month to reach a diagnosis. Vasculitis affects my sinuses, lungs, skin, and nerves. I am currently taking a regimen of four different immunosuppresants to try to keep my immune system under control and suppress the vasculitis.
For more about my disease course.
For details about my journey to a diagnosis, see here. For a summary of my first three and a half years of treatment, see here.
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