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Varigate Porphyria (VP)
This is my Variegate Porphyria story, and my hope is that it may help others who are struggling for a diagnosis, so they do not have to go down the same long and difficult road that I did.
My journey began in my 20s, shortly after starting birth control pills. I experienced recurring, unexplained abdominal pain and headaches, fragile skin, and seizure-like reactions to many medications. During my childbearing years, I suffered two miscarriages and a serious ectopic pregnancy that required surgery. In those days, I was often told to simply “take a shot of brandy, a hot shower, and go to bed”—advice I now realize was far from helpful. Despite these challenges, I am grateful to be the mother of two wonderful sons.
Over time, I sensed that my body was “different,” though I didn’t yet understand how. My skin was so fragile that even a small bump could peel it away. I constantly battled abdominal pain, nausea, and carb cravings. For many years, I managed to push through working as a professional violinist for over 30 years and pursuing other occupations to support myself. But with each passing decade, my unexplained symptoms multiplied: muscle pain, extreme medication reactions, alcohol intolerance, and sensitivity to caffeine, all of which made daily life unpredictable.
In 2009, while performing extensively and navigating menopause, my health collapsed. I could no longer hold my violin, suffered severe nerve pain, and was forced to leave the career that had defined me. What followed were years of misdiagnoses ranging from Myofascial Pain Syndrome to Stiff Person Syndrome along with countless failed treatments. During this time, I endured phlebotomies, plasma exchange therapy, and an endless trial-and-error cycle of medications, many of which made me worse. My weight dropped drastically, and I reached a point where I feared for my life.
In 2019, after extensive genetic testing, I finally received a definitive diagnosis: Varigate Porphyria (VP) and acquired Porphyria Cutanea Tarda (PCT). It was both frightening and relieving to finally have an answer. Soon after, I was introduced to Pan hematin treatments, which slowly began to bring me some relief. While not a cure, the therapy helped me regain strength and stability.
Alongside medical care, I sought a new sense of purpose. At one of my lowest points, my son gifted me his old camera. That small gesture became life changing. As a lifelong artist with passions for music, nature, and animals, I discovered a new way to heal—through nature photography.
Today, I run a small photography business called The Variegate Lens Fine Art Nature Photography. I share my work at art fairs, galleries, and online, always carrying reminders of my journey as a proud Porphyria warrior. Photography has given me back a sense of joy, purpose, and connection, and it allows me to spread awareness of this rare disease in creative and meaningful ways. At 71, I am proud to say I recently celebrated a full year without a Porphyria attack, the first in 50 years. I continue to undergo regular monitoring, advocate for myself in my medical care, and stay informed about the latest Porphyria research. My advice to others is simple: stay strong, trust your instincts, and learn as much as you can about your condition. Participate in research when possible as it can make a difference not just for yourself, but for others navigating the same path.
I will always live with Porphyria, but I no longer allow it to control me. Instead, I choose to live fully, creatively, and with gratitude. As I often tell people: “I will certainly grow old, but I will never grow up.”
To see more of my work, visit thevariegatelens.myportfolio.com or follow me on Instagram @thevariegatelens.
