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My Story

Updated: Jun 3, 2023

I want to share a piece of my story. I have Psoriasis and Psoriatic Arthritis. Psoriasis since I was two years old and Psoriatic Arthritis since about 15 years old. I spent my childhood dreaming of being a Dermatologist, I spent countless hours in the Barnes and Noble medical section, I read immunology textbooks in bed, I wrote my college essay about childhood challenges with Psoriasis. I made my major Pre-Med/Biology. I framed my life around these diseases. How exhausting. In college, I realized that my life didn’t have to be about the diseases; I am not the diseases. I changed my major multiple times, landing on Anthropology and Forensic Science.

How did I end up in IT, you may be wondering? Because I was Pre-Med, I got a job in IT at Saint Louis University (SLU) on the SLUCare side fixing doctors’ computers. I was able to meet doctors and see hospitals and clinics and learn about medical records. Lucky for me, I was good at it, and I liked it. I continued to work in IT even after I changed my majors and ultimately didn’t pursue Anthropology because I had a full-time job at SLU in IT. I kept the medical tie going by getting my Masters in Health Information Management and focused my projects on bringing the technology to patients to get better patient care.

Fast forward to now, where I no longer work in healthcare and have essentially been able to ignore my diseases at World Wide Technology (WWT) because I had a treatment that worked. In 2020 I was again at a point where my treatment stopped working, and I was playing the game of trying new ones to find one (or two or three) that would.

A quick outline of what it’s like to manage my health: Several pills a day, regular self-injections, regular lab work, regular x-rays, phototherapy, five specialists to see every three to 12 months, more if something is flared up, plus primary care. Just remembering what you are taking and when to take it is exhausting enough, let alone spending two to 10 hours a month at a doctor's office. What it feels like is fatigue most days. Overdoing it on good days because you feel good and you are so excited to get something done. I can’t cut my food or go for a walk or make dinner on a bad day. The anxiety of treatments and not being able to do something I want or need to do. Even with all of this, I know that I am privileged to have access to healthcare to try new treatments and afford them.

Recently I have been reflecting on how far I have come and how far medicine has come. When I was first diagnosed, there were very few treatment options limited to creams or ointments and phototherapy. The side effects were long-lasting from some of those early options. Fifteen years ago, when I needed a new treatment, I had two biologic options. Ten years ago, when I needed a new treatment, there were several biologic options.

Today as I look at treatment options, there are a dozen or more biologic treatments. I am so excited that people have

funded Psoriatic disease research and that there are more doctors out there that care and study it. There have been so many years that I have educated Dermatology residents on what Psoriasis is, what it looks like, what it feels like, and what treatments I have tried because I was the only patient in their residency who they saw with it. I am hopeful and saddened that the number of people in the world with Psoriatic disease has grown since my diagnosis because it brings more data, more research, more treatments. Still, it means more people are suffering.

I ironically feel so lucky to have had so many years to learn how to cope with the diseases. Having them as a child was no picnic, but the resiliency, perseverance, and empathy that I have developed have made me who I am today. I cannot imagine receiving these diagnoses as an adult and starting this journey now. I am lucky to have built my career during a period of well-managed disease symptoms to be more comfortable managing through the times that it isn’t well managed. I am also lucky to have worked at multiple places that have had good health insurance and allowed for flexible scheduling to accommodate the ridiculous number of doctor appointments. My heart goes out to all the parents out there trying to manage these diseases or diseases like this with/for their children.

I hope that this little tidbit of my story helps bring some visibility to immune-related diseases and what people may be dealing with around you that you can’t see.

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