The extraordinary people who make life better for the porphyria community

Lately, there has been more attention directed my way than I am entirely comfortable with. Recently, it came after my team shared behind-the-scenes photos from filming a segment for the morning television show “The Balancing Act” in the office of the United Porphyrias Association (UPA), where I serve as president.

The episode will focus on erythropoietic protoporphyria, the ultra-rare disease my youngest son, Brady, lives with. It’s an opportunity for a large audience to learn about this debilitating photosensitive disease.

But when my team informed me the photos would be shared on social media and I’d “just have to deal with it,” I laughed and immediately did what I usually do. I’m sure there’s a proper term for it. Deflection? Redirecting? Whatever the definition is, I’m guilty of it.

The truth is that whenever someone says something kind about me and this work, I find it a bit confusing, and my mind immediately goes somewhere else. I start thinking about all the people I know who are doing extraordinary things and making a difference every single day. These are people who show up with open hearts and unwavering commitment. Those are the people I want to talk about.

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I think about Mayra Martinez.

Martinez, a patient advocate at the UPA, has a remarkable gift for making people feel less alone. She will answer a call no matter the time of day because she knows what it feels like to be frightened and searching for answers. Because she lives with acute hepatic porphyria, she has a special understanding of those facing paralysis, uncertainty, and fear. She listens, she comforts, and she reminds people they are not alone. She celebrates victories and sits with families through difficult moments. To me, she is far more than a patient advocate — she is a sister, a confidante, and a friend.

I think about Herbert Bonkovsky, MD.

Few people in the world possess Bonkovsky’s depth of experience and expertise in porphyria. But what impresses me most isn’t his knowledge, but rather his generosity.

Recently, I connected him with a physician in Trinidad and Tobago who needed guidance caring for a patient with porphyria. Bonkovsky responded immediately, helping to establish a path forward and ensuring that the patient could access appropriate care. Today, that patient has access to expert care because one physician took the time to help another. That generosity ripples further than any of us will ever know.

I think about Craig Leppert.

Leppert is the leader at the nonprofit Shadow Jumpers. Most people see the incredible experiences he creates for children and families living with photosensitive diseases. They see the smiles, the adventures, and the memories. What they don’t see are the countless hours of planning, problem-solving, fundraising, and managing details that make those moments possible. Leppert works tirelessly because he believes every child deserves joy, belonging, and a chance to simply be a kid. In a world that often revolves around uncertainty, he creates memories in spite of the impact of the sun.

And then there is Aneta Ivanova, MD.

A screenshot of columnist Kristen Wheeden shared on social media by her son Brady. (Courtesy of Kristen Wheeden)

For many patients in her country, Bulgaria, she is the expert. She has dedicated herself to understanding porphyria and providing exceptional care to people who might otherwise struggle to find knowledgeable support. Her commitment extends far beyond medicine. She advocates, educates, and ensures her patients know they are not forgotten. Her work in the region changes lives every day.

The reality is that I could continue this list for pages and pages.

I could tell you about researchers who spend years chasing answers to questions that may help only a handful of patients. I could tell you about caregivers who put their own needs aside to care for someone they love. I could tell you about volunteers, donors, advocates, clinicians, and patients who continue moving forward despite incredible challenges.

One of the greatest privileges of this work is getting to surround myself and this community with people who are kind, talented, and deeply skilled in their areas of expertise. The impact of this work is about them, their gifts, and what becomes possible when good people unite their talents to a shared purpose.

These are the people who inspire me. Meaningful moments and meaningful progress are built by countless individuals who choose, every single day, to care.

So, whenever attention finds its way to me, I will probably continue to redirect it toward the people doing the hard and unseen work — the “heart work” — that makes our community stronger. I’m so proud of them!

But every once in a while, something slips through my defenses. Under one of those behind-the-scenes photos on social media, Brady posted a simple comment: “I’m very proud of my mom.”

I’ve spent this entire column talking about the people who deserve the spotlight. But I’ll admit, that one is awfully hard to deflect!

Note: Porphyria News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Porphyria News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to porphyria.