Advocating for porphyria treatment has both roses and thorns
Joy reminds us of what's possible; anger reminds us of what still needs to change
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I love my job!
It is hard to adequately express how blessed I feel to be part of the porphyria community, to lead the United Porphyrias Association, and to advocate on behalf of patients and caregivers. I get to connect with expert physicians, support patients, curate meaningful events, build community, and lead an amazing, deeply dedicated team. All of this started to happen when my youngest son was diagnosed with erythropoietic protoporphyria in 2009.
And so often, I am just happy.
Happy when someone finally gets a diagnosis after years of searching. Happy when I hear relief in the voice of someone who feels believed. Happy when a treatment works and life opens up for someone. Happy when people meet each other and suddenly realize, “Oh, my gosh, you too?” That moment never gets old.
There is real joy in this work. The kind that keeps me going even on the days when my inbox is overflowing, my to-do list is judging me, and I honestly cannot remember if I’ve eaten anything.
But then there is the other side. There are days when I am so angry.
Angry when a diagnosis is missed because no one thought to look. Angry when a patient is not believed. Angry when someone has to explain their pain over and over again to people who should be listening the first time. Angry when access to treatment is blocked, delayed, denied, or buried under paperwork. Angry when cost stands between a person and the care they need.
Because I have seen and felt what is possible.
I have seen people who once avoided the sun step into it with freedom. I have seen acute attacks that once controlled someone’s life begin to loosen their grip. I have seen what happens when the right treatment reaches the right person. And I have seen what it means when a new friend becomes part of the extended “porphamily” — our loving term for our extended porphryia family!
Hope and heartbreak push us to act
For a long time, I thought I might have to choose which feeling to lead with. The joy or the anger. The gratitude or the frustration. The hope or the heartbreak.
But I have come to understand that this is exactly how advocacy works. The joy reminds us of what is possible. The anger reminds us of what still needs to change. And together, they push us to act. So, what do we do?
We keep our eyes everywhere. We listen for what is being missed. We watch for where people are falling through the cracks. We pay attention when a story repeats itself because repeated stories usually indicate a systemic problem hiding in plain sight.
We make connections. Between patients and physicians. Between researchers and real lives. Between one family who feels alone and another who says, “We’ve been there, too.”
We create new education opportunities for clinicians, patients, families, and anyone willing to learn. And we keep saying the things that need to be said until they are heard.
We hold space and hold hands with patients through one-on-one care, small group discussions, and sometimes a big gathering that may or may not include a dance party. (Let’s be honest. There is usually a dance party.)
Advocacy work has helped build a strong community
This work has changed me. There are days I wish I had never learned the word “porphyria.” Once you see this level of suffering, you carry it with you, and I wish it did not exist.
But it has also shaped how I show up for my son and for every person walking this path. It has helped build a community that is strong, connected, stubborn in the best way, and determined to make life better.
When I need to steady myself after all the emotion, I come back to something simple — a pink rose.
There is softness in a rose. Beauty. Comfort. But roses also have thorns. And so do we.
The softness helps us connect, listen, and care. The thorns help us stand firm, push back, and demand change.
We need both in advocacy — the heart to sit with someone in pain, and the backbone to say that this is not good enough.
Love people well. Tell our truth. Build what is missing. And when needed, show the thorns!
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.
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