As a child, I never quite felt like I could keep up with others my age. I found myself struggling to walk up the stairs, often using the handrail. I was always the last kid picked for team sports in PE class, because everyone knew I was the slowest. I can recall talking to my parents about my knees bothering me, but I was told to toughen up.
Despite my slower pace and seemingly endless pain, I still tried to push the boundaries. In my mind, I was just as capable as my peers, maybe just a bit slower. A self-proclaimed adrenaline junkie at heart, I loved the adventure of obstacle courses, whitewater canoeing, hiking trails, rock climbing, and mountain biking. I came to embrace my competitive spirit playing junior Olympic volleyball starting in middle school. I found my expressive side in ballet and jazz. I felt completely free at the helm of a sailboat, sails full of wind. I could easily get lost for hours using music as an escape as my fingers magically danced across the keys of my oboe.
Yet, despite all that I did to stay physically active, I still had gnawing pain that seemed to hold me back.
In high school, I noticed my hands hurt after playing the oboe and then my jaw. There were days that I could barely open my mouth, and even that was filled with prying pain. I also noticed my toes start to fatten (aka “sausage digits”), and blisters formed under my toenails. My lower back would seize up after anything physical, and my knees would fill with fluid.
After getting diagnosed with severe psoriasis at age 10, I routinely saw a dermatologist who helped me manage my skin but never mentioned the possibility of arthritis. I went to my pediatrician for annual check-ups and about the pain I was experiencing. I was always told it was growing pains and that I would outgrow the pain. I couldn’t understand why I was the only kid my age who was crying over growing pains. In 10th grade, my pediatrician finally diagnosed me with a disfunction that affects the inner workings of the knee. I was given a knee brace, a few physical therapy exercises, and bed rest for 6 weeks.
The pain still existed.
When I went back to sports, despite the pain, my right knee swelled up so bad that I couldn’t walk on it. My knee would literally swell to the size of a basketball. The extra weight bounced and pulled when I walked, forcing me to take bed rest once again.
This time, I went to an orthopedic physician who drained my knee, sent it off for testing, and gave me a steroid injection. This went on every few months for 2 years. The lab results would always come back negative for gout and rheumatoid arthritis, leaving my doctor perplexed as to why I kept experiencing the swelling. I knew something wasn’t right, but in the early ‘90s, there were few tools available for people to do their own research.
Luckily, my orthopedic doctor’s college roommate was a dermatologist. On a chance visit, my orthopedist ran my case by the dermatologist -- all because I had a severe case of psoriasis. Without seeing me, the dermatologist suggested I could have psoriatic arthritis. Unfamiliar with this form of arthritis, my orthopedic sent me to a specialty hospital where I met with a rheumatologist. It was then that I would finally have a diagnosis.
As I entered the hospital, the long halls seemed daunting to me. I was 17 years old, had never driven to the city by myself, let alone to a hospital, and had to navigate this enormous hospital, with swollen toes and knees and radiating back pain -- alone. Too proud, and maybe a bit afraid, to ask for a wheelchair, I hobbled my way through the corridors. The rheumatologist met with me and immediately knew what was wrong with me. I had psoriatic arthritis. He took a fluid biopsy from my clavicle, more fluid from my knee, and a bone biopsy from my thumb. I sat down in a chair next to his desk in his office. He pulled a thick medical book from a shelf, thumbed to page 386, and turned the book to face me. He pointed to a picture in the book and said, “This will be you by age 21.”
It was a picture of a cadaver in a casket.
Unable to fully process what he was telling me, I eventually realized that whatever it was that was wrong with me, it was not a good prognosis. I thought I was going in for a routine appointment and maybe some lab work. I never imagined I’d walk away with a time limit on my life.
After we discussed my psoriatic arthritis diagnosis in more detail, it was apparent to the doctor that my autoimmune system was deeply compromised and, without some miracle, my body was going to continue to decay rapidly. I had likely been living with psoriatic arthritis since I was about 4. For more than a decade, my immune system attacked itself, causing irreversible joint and tissue damage. Despite the grave diagnosis, I agreed to take medications available at the time that were suitable for a teenager. Remember, it was 1993, and few treatment options were available. A cocktail of oral steroids and methotrexate, muscle relaxers, gold injections, and more steroid injections helped slow the progression of the disease.
I was only 17 and I thought my life was over. Never did I think that I had psoriatic arthritis.
I’m now 44 and have gone on to live a relatively healthy life. I’ve lived twice as long as my “death date,” as I refer to it. Throughout the rest of my teenage years and into my 20s, I participated in numerous research and experimental drug protocols at the National Institutes of Health. It was the resources at NIH that helped me make it past my 21st birthday and the innovation and advancement of medicine that I’ve been able to thrive in the years since. I am a competitive powerlifter, standup paddleboard racer, and adventure-seeker. Even though I will have to manage the disease for the rest of my life -- chronic pain, weakened immune system, and flare-ups -- I don’t let psoriasis and psoriatic arthritis define who I am. I am a stronger, more resilient person for having gone through the long path to diagnosis. I am so grateful to the team of doctors who led my care at the onset of diagnosis and the decades since. Thanks to their guidance and treatment, I feel I have the tools I need to manage the disease.
Photo Credit: PhotoAlto/Michele Constantini/PhotoAlto Agency RF Collection via Getty Images
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