vasculitides

living with vasculitis

Sharing Information to Improve Lives

With over 30 years of experience in biomedical research and as a patient living with EGPA/Churg-Strauss Syndrome, I am dedicated to providing comprehensive information about vasculitis.

Sharing Information to Improve Lives

With over 30 years of experience in biomedical research and as a patient living with EGPA/Churg-Strauss Syndrome, I am dedicated to providing comprehensive information about vasculitis.

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 thirty 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 three different immunosuppressants to try to keep my immune system under control and suppress the vasculitis.

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.

About 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 thirty 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 three different immunosuppressants to try to keep my immune system under control and suppress the vasculitis.

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.

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 living with vasculitis.

I hope to use my background in science and medicine and my experience as a teacher to share information about vasculitis on this website.  This website is one way that I hope to give back to others who have helped me.

Building a Community

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Building a Community

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 living with vasculitis.

I hope to use my background in science and medicine and my experience as a teacher to share information about vasculitis on this website.  This website is one way that I hope to give back to others who have helped me.

Sign Up for Our Newsletter to Join the Vasculitides Community

We will never rent, sell, or otherwise use your email address without your permission. Privacy Policy

Disclaimer

The information presented on this site is provided for education and informational purposes. 
Any opinions expressed on this site are entirely my own and are based on my personal experiences and my interpretations of data.
I am not a physician or medical care provider and any opinions or statements expressed here should not be interpreted as personal medical advice.
I have made all reasonable attempts to provide accurate information but I do not assume any responsibility for errors or omissions.  Please contact me should you feel you have identified any such inaccuracies. Note that posts on the site are not usually updated and reflect current information as of the time of the original posting.

Copyright

All content on this site is original unless otherwise noted, © vasculitides.com, all rights reserved. Original content on the site may be freely used for personal, educational, or non-commercial purposes unless otherwise noted. If you do share or use any original content posted on this site, please attribute vasculitides.com as the source and link back to the site.

Disclosures

In the interest of transparency, below are disclosures of my relationships with any entities which could be a potential source of conflict of interest or bias related to any content posted on this site. Disclosures will be noted on individual posts, with more detailed information describing the nature of the potential conflicts or biases described below.

Patient in GSK-sponsored clinical trial for mepolizumab.  I was a patient in the first clinical trial testing mepolizumab in EGPA/Churg-Strauss patients between March 2015 to May 2016. The trial was funded by GSK, the manufacturer of mepolizumab. I was randomized to the placebo control group but later received this drug through a long term access program sponsored by GSK. I am still currently taking this drug.  I received financial compensation for monthly study visits totalling less than $1,000 during the fourteen months of the trial and I donated these funds to the non-profit Vasculitis Foundation.

VPPRN patient-partner. I am a patient research partner, without financial compensation, for the Vasculitis Patient Powered Research Network (VPPRN) which was previously funded by PCORI.

Compensation for participation in educational, promotional, or other activities as a person living with vasculitis. I occasionally participate in surveys or informational interviews, attend and present at workshops and symposia (virtual and in person), or serve on committees or working groups. Sometimes I am offered financial compensation in the form of honoraria, usually less than $1000 per occasion.  Any financial compensation that I receive for these activities is donated to the non-profit Vasculitis Foundation.

Biomedical researcher.  In my professional life, I have a Ph.D. in Pathology. I worked as a biomedical researcher at a major medical institution until 2020, and I was funded by grants received from the National Institutes of Health (NIH). I am currently head of R&D for a biotech company which was spun out of my previous university. My background may lead me to have a bias toward evidence-based medicine.

vas-cu-li-ti-des. Noun. Plural of: vasculitis.
Definition: inflammation of the blood vessels;
Also known as angiitis or arteritis.

vas-cu-li-ti-des. Noun. Plural of: vasculitis.
Definition: inflammation of the blood vessels;
Also known as angiitis or arteritis.

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