In life with rare disease, it’s important to find your people
Making lifelong friends has been an unexpected gift of porphyria
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A friend recently sent me a grainy image taken 10 years ago at Camp Sundown, a camp for children with rare diseases that make sunlight dangerous and painful. In the photo, my friend and I are sitting on top of a car with a few other moms. Back then, we brought our families to camp year after year, becoming fast friends because we were all raising children whose worlds had to be rearranged around the sun. We called ourselves the Moonlight Mommas.
Camp was a haven for us during those years. Nighttime became daytime, and our kids could have adventures without watching the sun or calculating exposure. They were able to create friendships and find allies who understood what it was like to live differently because of their photosensitivity.
While our kids were finding one another, so were we. We shared many laughs and some good cries. We compared notes, talked about what worked and what didn’t, worried about our kids, solved problems, and laughed until our stomachs hurt. We didn’t have to explain anything because everyone in the group already got it.
Somehow, the Moonlight Mommas ended up on a nighttime adventure on the property when our car broke down in an open field. While waiting for our rescue, we naturally climbed onto the roof of the car. There we sat, stranded in the middle of the night, looking up at a sky filled with stars.
As we waited, we all caught our collective breath as a shooting star soared across the sky. Every one of us stopped talking and felt the magic of it all. That memory sticks with me.
What strikes me now is how little we knew about where life would take us. We didn’t know who our children would become, what challenges adolescence, college, and adulthood would bring, or how the questions we asked each other would change as our children grew. We were just grateful to have found our people.
10 years later
In 2009, when my son Brady was diagnosed with erythropoietic protoporphyria at the age of 3, the trajectory of our family’s life changed. But when life takes you down a road you never planned to travel, you tend to find unexpected things. For me, one of the greatest gifts has been the people. Through porphyria, I’ve met extraordinary people from all over the world, many of whom have become friends, colleagues, collaborators, and mentors.
Although Camp Sundown is now closed, it gave our family something incredibly special. The experience stayed with me and is one of the reasons why the nonprofits Shadow Jumpers and the United Porphyrias Association (where I serve as president) created Sun Escape, a camp for photosensitive kids: so they can experience a space where the world bends around them for a change. And I wanted more parents to connect and realize they aren’t the only ones asking these questions.
The Moonlight Mamas stargaze during a nighttime adventure at Camp Sundown in 2016. (Courtesy of Colleen McKillop)
That feeling is also at the heart of programs like Connect Up, which offers small group meetings where patients and caregivers can connect to exchange weird questions, celebrate tiny victories and big events, and laugh and cry.
People living with porphyria need each other — other humans who can simply say, “Me, too.” Those two words can mean so much: “I understand. You don’t have to explain all of this to me. You are not alone.”
If you are living with porphyria, caring for someone with the condition, or standing at the beginning of this journey wondering how in the world you are supposed to figure it all out, please reach out. We’ll help you find your people. You don’t have to do it alone.
Ten years ago, the Moonlight Mommas’ car broke down, and we ended up sitting on the roof looking at the stars. None of it was planned. Maybe that is why the picture reminds me so much of life with a rare disease. The road twists and turns, plans change, and sometimes things break down. But if you’re lucky, somewhere along the way, you’ll look around and realize that there are some extraordinary people sitting beside you.
Find your people. And if you haven’t found them yet, I’d be honored to help you!
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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