Meet Jen

I am a 30, a college grad, a young professional, a New Orleans native, and so much more. My life changed dramatically in my early to mid-20s, when I started experiencing a rapid deterioration of symptoms that was later diagnosed as an antibody deficiency, a type of primary immunodeficiency disease. These are rare, genetic diseases in which parts of the immune system are missing or functioning improperly. I am a somewhat odd case, because my disease did not really manifest itself heavily until adulthood. Prior to this, I was a former national team gymnast and international medalist, an honor roll student, someone who always held a job or two on top of my obligations, and generally just an overachiever. The onset of this disease turned me into a person that I no longer recognized: a permanently exhausted human who was always fighting respiratory infections. I was constantly skipping social outings and workouts just to muster up enough energy to keep going to my 9-5 office job. It got progressively worse over the course of a few years until I met an immunologist who worked with LSU Health in New Orleans in the fall of 2018. Several months (and what felt like a thousand lab tests) later, she gave me a diagnosis that felt like it changed everything. Since then, I have been diagnosed with several other co-morbidities along the way, and I am continuously learning to manage them within the framework of my daily life.

In the immediate aftermath of my first diagnosis, I craved to read something that gave me hope. I looked for books, blogs, or anything else I could get my hands on, but when you have a rare disease, literature on the topic is very limited. I relied instead on the experience of some of the patients and caregivers that I met along the way.

Now that I have learned to live and find joy in this environment, I want to share my experiences. Whether you are newly diagnosed or a chronic disease pro who is just stuck in a rut or somewhere in between, I hope you find joy and hope in this blog. I hope it resonates with your experiences and that you feel seen.

Chronically yours,

Jen