Meet Camila, EPP Warrior
“I remember one of my earliest symptoms perfectly. I was at the beach and told my mom, ‘Mami, I’m burning.’”
-Camila, EPP patient.
My name is Camila Baerwald, I’m 37 years old, originally from Chile, and I now live in Los Angeles. I got married four years ago to my husband, Yarden, and together we have two wonderful children: Yosef Mendel, who is 2 years old, and Anael Shira, who is 11 months old.
I love sports, especially squash and Pilates. I also enjoy singing, dancing, being creative through art, trying new things, and spending time with friends and family.
My journey with Erythropoietic Protoporphyria (EPP) began when I was just 3 years old.
“One of the most difficult things about EPP is missing out.”
-Camila, EPP patient.
I remember one of my earliest symptoms perfectly. I was at the beach and told my mom, “Mami, I’m burning.” At the time, nobody knew why this was happening. It took two years before I finally received a diagnosis, and I was 5 years old when we learned that I had EPP.
Living with EPP has affected every stage of my life. The hardest part has always been the feeling that I cannot fully enjoy outdoor life without worrying about a painful attack and the burning sensation that comes with it. It creates a feeling of anguish and despair.
Now that I have a family of my own, it feels even harder because I know my condition affects them too. We constantly have to adapt our plans around the sun and around what is safe for me.
One of the most difficult things about EPP is missing out. I’ve had to accept that my life needs to be built around times of the day that are not dangerous for me. That often means spending a lot of time indoors. Internally, I am always fighting those feelings, and that can be exhausting.
Growing up, I loved going to summer camps. Every year, my parents would warn me that if I went, I would probably have an attack. But I was a stubborn little girl and I went anyway. Sure enough, after a few days, my parents would have to come pick me up. I remember telling them, “I’d rather enjoy it for a bit than not live my life.”
Another challenge has been dealing with doctors who don’t know EPP exists. Even dermatologists sometimes thought I was exaggerating my symptoms and were unable to help me get proper treatment. Having to explain my own condition to medical professionals has often been frustrating.
Camila and her daughter at the beach.
What helps me cope is gratitude. I often remind myself, “It could be worse.” I focus on the beauty in my life, the people I love, and the love that surrounds me. I also plan activities around times when I can safely be outside, like going to the beach early in the morning or close to sunset. I’ve also learned to enjoy indoor activities, like taking a ceramics workshop or spending time with friends in creative ways.
My faith in God is a crucial part of my life. Understanding that everything comes from above, and that if I have this condition it must somehow be part of my path, gives me strength. The support of my family also makes an enormous difference. Their willingness to adapt to my condition helps ease some of the burden.
This journey has taught me that I am strong and that I have so much to give to this world.
The support of others has played a huge role in my life. Feeling cared for is what kept me going. My parents, especially, worked tirelessly to help me feel normal. They spoke with doctors, searched for information, and did everything they could to find the best care for me, even when very little was known about EPP.
“If I could tell newly diagnosed patients one thing, it would be this: there is so much more support available today than there was when I was growing up.”
There are awareness efforts, research, and support groups that simply did not exist before. In fact, I had never met another person with EPP, and only recently, when I was feeling especially lonely, I began searching online and found UPA.
I wish more people understood how difficult it is to feel like you are burning and not be able to enjoy something as simple as taking a walk or going on a hike for a few hours.
What gives me hope is knowing that, God willing, science and technology will continue to advance and allow people with EPP to live fuller lives and enjoy the sun. I have been waiting more than 30 years for that moment.
My goal is simple: I want to enjoy nature without fear. I want to feel less restricted. I hope everyone living with EPP can easily access help and treatment. And I hope this condition becomes widely known throughout the medical community so that future patients can be diagnosed more quickly and receive the care they deserve.
Camila’s inspiring story with EPP.
Want to share your story? Contact us at katri@porphyria.org
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