Desert Health is pleased to feature this follow-up to Crystal’s 2016 story on her struggle with Pemphigus Vulgaris as requested by a reader. Original editorial is available at DesertHealthNews.com.
Harrell receiving IV therapy in 2016 for her rare autoimmune disease
It’s been three years since the day I was diagnosed with a rare autoimmune disease called Pemphigus Vulgaris. Being on the cusp of young adulthood while in pursuit of a bachelor’s degree in communication, I took that diagnosis as a sign that life as I knew it was coming to a complete halt. And at that moment, I realized it had been changing for quite some time.
Pemphigus Vulgaris is a condition that manifests on the skin and gums, where the body’s immune system mistakenly attacks itself, leaving blistering lesions that do not heal without the use of corticosteroids or immunosuppressants. Prior to my diagnosis, I had been experiencing the side effects of my then-unknown condition for months.
My face was blistering and bleeding with every light touch and the skin on the rest of my body peeled away on its own, revealing raw flesh to the open air. Suffice it to say, I didn’t leave home over the course of four months due to the physical pain and emotional distress experienced when I saw the expressions on strangers’ faces in passing. I was tortured by the fact that I didn’t know what was causing these symptoms, and every doctor’s appointment left my hope shattered as there was no physician that could give me proper treatment.
Receiving a diagnosis meant that there was a marked path I could follow toward recovery. Finally, I was put under the care of wonderful doctors in Loma Linda who prescribed Rituximab infusions over the course of a month. Although little is known about what causes Pemphigus Vulgaris, Rituximab has been proven to be the most effective form of treatment, coupled with the daily intake of corticosteroids and/or additional immunosuppressants to shock the immune system into remission. It took about eight weeks from my last Rituximab infusion in September of 2016 for me to start seeing results.
My skin healed gradually and by December of that same year, there was not a single open wound left on my body. I took tapering doses of prednisone and CellCept until May of 2017, and then to my sheer joy, I was in clinical remission before the start of summer.
I would be lying if I said I was thankful for my experience with Pemphigus Vulgaris; however, there is no denying that I changed for the better during the excruciating months of my ordeal. I became stronger, more humble, and my passion for life increased tenfold. I live each day with the will to make the most out of every moment because I know very well that situations can change quickly. I am grateful that I have not experienced any symptoms since then, and although I sometimes fear the possibility of relapsing, I brush off those thoughts very quickly.
I don’t see the leftover pill bottles in my medicine cabinet as hidden skeletons in the closet, or the faint scars dotting my skin as perpetual reminders of my suffering. I view all the lingering relics of my illness as testaments to what I am capable of overcoming. Although the disease I had was my own personal journey, there were many hands that held me and guided me to a place of comforting strength.
The human spirit is more powerful than the body it inhabits, still prospering even when we begin to physically deteriorate. I have won the battle against myself, without surrender and with newfound hope.
Crystal Harrell grew up in the Coachella Valley and graduated from Cal State San Bernardino with a degree in communication. She continues to write with the hope of inspiring others and can be reached at [email protected].
Comments (0)