Meet Caul, EPP Warrior
“The outdoors has always been a big part of who I am. The problem was that the sun affected me very differently from everyone else.”
-Caul, EPP patient.
My name is Caul Cook. I’m 23 years old and from Vernon, Texas.
Growing up, my older brother and I were both diagnosed with Erythropoietic Protoporphyria (EPP) at a young age. But despite living with EPP, we grew up doing the things we loved. We competed in fishing tournaments, roped, rode horses, and spent lots of time in the hunting blind with our family.
The outdoors has always been a big part of who I am. The problem was that the sun affected me very differently from everyone else.
My symptoms first began when I was around three years old. When I was younger, the pain felt like fire ants. As I’ve gotten older, I describe it more like a firecracker going off on the inside.
My older brother went through three years of testing before being diagnosed with EPP. For me, it took about a year and multiple trips to Houston, Texas, before we finally had an answer.
“EPP did not just cause agony physically. It hurt emotionally because I felt isolated from the things I was passionate about.”
-Caul, EPP patient.
Despite the fact that I suffer from EPP, I do not let it hold me back from my passions or my social life.
That doesn’t mean it has been easy.
The hardest part of living with porphyria has been not getting to stay out fishing, roping, or hunting as long as my friends and family. EPP did not just cause agony physically. It hurt emotionally because I felt isolated from the things I was passionate about.
There are moments from my childhood that I will never forget.
Caul fishing.
During a fishing tournament at the THSBA, I burned so badly from the UV rays that my hands turned purple and swelled up to the size of a baseball glove.
On family vacations, when my brother and I would fish from the boat, we could get so burned that we would sit in the back of the boat and dip our faces and hands into the ice chest.
EPP hurts like a third-degree burn.
A majority of us who are affected by EPP go through this pain silently and alone. Even though the pain can be excruciating, it is difficult to explain that level of discomfort to someone who does not have the disease.
People might see someone fishing, hunting, riding a horse, or spending time outside and assume everything is fine.
They don’t always see what that person may be feeling underneath.
Caul doing saddle bronc riding.
Over the years, I have learned to make it a priority to overcome each day with positivity and use UV-protective attire to my advantage.
I have also learned how important self-care, my relationship with Christ, and researching my disease are for helping me feel less discouraged.
The power of prayer, along with support from my friends and family, helps me through difficult moments. And, of course, Benadryl has been something I have used as well.
Living with EPP has also made me question why testing can be so strenuous and difficult and why it can be so expensive for us to feel better. It often feels like there is a lack of outlets and doctors who truly understand this disease.
But just because the sun affects me differently does not mean I have to stop living.
I believe God put me on this earth with a unique purpose and a testimony that can resonate with a variety of people. I want to show others that although you may be struggling with something, God will always bless you with strength to get through it.
Throughout my childhood, my mother was my biggest advocate.
She was a very competitive barrel racer, but she was also the person who researched EPP, helped treat us accordingly, and organized many ways to raise awareness about the disease.
Sadly, she passed away from brain cancer while I was in high school.
Today, my brother and I try our best to carry on her passion for raising awareness about EPP while keeping her cowboy legacy alive.
Having my brother beside me has also been a blessing. He understands EPP in a way that very few people can because he lives with it too.
Together, we continue trying to find ways to outsmart the sun.
Caul doing roping.
Being different or having something like EPP does not change who you are as a person.
My faith has taught me to believe that God has something special waiting for all of us. Through faith and prayer, I try my best to live each day knowing that I am blessed.
Looking forward, knowing there is a possibility of treatment for EPP gives me hope. I also trust that God will continue to bring healing and purpose to my life.
One of my biggest goals is to use my story to help other people.
Through sponsorships and support, I would love to connect with individuals who have similar experiences, kids with disabilities, or anyone struggling with discouragement, and give them the chance to experience the outdoors through hunting and fishing.
EPP has made being outside harder, but it has never changed how much I love it.
I’m still fishing. I’m still hunting. I’m still roping.
And my brother and I are still carrying our mom’s torch, keeping her cowboy legacy alive, and finding new ways to outsmart the sun.
Caul’s inspiring story with EPP.
Want to share your story? Contact us at katri@porphyria.org
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