As all other people living with APS Type 1, my journey has not been linear, and there have been lots of ups and downs. Having a rare disease is hard because one day one thing can get better, but the next day something else can get worse. Leaning on my faith through this disease has been my anchor point, and has gotten me through all of the ups and downs. Looking back on everything I’ve gone through so far, I’m so proud of how far I’ve come! If I could tell my younger self some words of encouragement, it would be that while things will continue to be hard, they will also get better in ways you would never imagine. Science is progressing every day.
Case in point is Dr. Lionakis’ clinical trial using Ruxolitinib. This trial has had a profound and positive impact on my health. I am so grateful to science in general and Dr. Lionakis and his incredible NIH team for their dedication to APS Type 1 and our community. And, as my mom always reminds me: I am still so young and there are many more discoveries to come in my lifetime, which gives me so much hope.
