Meet Cassandre, EPP Warrior
“My first symptoms started one day at the beach when I was 2 years old. I cried in pain and swelled a little”
-Cassandre, EPP patient.
My name is Cassandre, I’m 11 years old, and I live near Paris in France with my parents and my two brothers. I’m very funny, creative, and artsy. I love drawing and reading, playing volleyball, spending time with my friends or my cats, and exploring new places and traveling.
My first symptoms started one day at the beach when I was 2 years old. I cried in pain and swelled a little, but of course nobody understood what was happening. We went to the ER, saw dermatologists, and my parents even searched online medical publications. My mother actually found an article about EPP that matched my symptoms, but she didn’t want to believe that could be the diagnosis.
“The hardest part is definitely the pain. It’s awful. Another difficult part is not being able to do simple things whenever I want to.”
-Cassandre, EPP patient.
I would have painful crises about three or four times a year. My feet, hands, and cheeks would swell, and I would cry from pain for two or three days at a time.
When I was 4 and a half years old, I was finally diagnosed with EPP after a doctor ordered a blood test because they suspected either EPP or lupus.
From October until March or April, I can live pretty normally. The only exception is during ski trips because the reflection of the sun on the snow can still trigger symptoms. The rest of the year, I have to protect myself from the sun all the time. I wear gloves, closed shoes, a light scarf to cover my face, and a cap, and if it’s too hot for accessories, I carry an umbrella.
During summer, we don’t go outside between 11 a.m. and 5 p.m. My family is originally from Greece and Portugal, where we spend our holidays, but we stay indoors most of the day. We usually only go to the beach around 7 or 8 p.m. It can be very frustrating, but it’s still better than being in pain.
Every year, I have to do blood tests, which I really hate, and an abdominal ultrasound. Thankfully, apart from that, there are no other major medical consequences right now.
Socially, things have been pretty good because our friends and family adjust to my situation and understand how painful EPP can be. Sometimes kids ask me why I’m all covered up or tease me a little, and because I’m shy, I usually don’t answer back. But most of my friends are protective and make sure I stay in the shade during gym class or school trips.
The hardest part is definitely the pain. It’s awful. Another difficult part is not being able to do simple things whenever I want to. We always have to check the weather, look for shade, carry umbrellas, portable fans, and organize everything around the sun.
Cassandre and her mom hiking with an umbrella.
Thankfully, standing close to a fan helps me feel better. So we always carry one with us, either a small portable fan for walks, restaurants, school, or the car, or bigger ones at home, in hotels, or at friends’ houses.
My family and friends give me strength, and I know they try their best to help me live as normally as possible. My teachers are also very understanding.
I think one important thing is learning how to stay safe without being afraid to explain your condition to others. I also hope treatments continue to improve and become available to everyone. In France, Scenesse implants exist, but they are not reimbursed, so many people can’t afford them. I really hope future treatments become accessible for everyone living with EPP.
Cassandre’s inspiring story with EPP.
Want to share your story? Contact us at katri@porphyria.org
Meet others living with porphyria
