Heather

Why do I participate in research?

“I was diagnosed with Takayasu’s Arteritis in 1997 at the tender age of 13. Being one of the rare pediatric cases, my dad found an online community of others with Takayasu’s and we relied heavily on them for their advice, insight, and expertise when making decisions involving my care. The online community resources were invaluable to my family and I and so I try to be as active as possible on message boards and within my own small group of friends with Takayasu’s in the hopes of helping others.

While my life has been anything but normal, I graduated from high school, and college and got married despite the ups and downs of Takayasu’s. In 2019 I had a successful pregnancy that resulted in the birth of a healthy baby boy. Throughout my pregnancy I participated in the Vasculitis Pregnancy Registry (VPREG) because I felt that it was very important to contribute where I can. I was thrilled when I was approached to be a Patient-partner and I hope that my experience and patient perspective will help further propel the VPREG study and the VPPRN in vasculitis research.”

-Heather