Tell us who you are, what you do and where you are from.
My name is Charlotte Hayes, I am an influencer on TikTok from Spokane Washington.
What skin condition do you have? Can you tell us a bit about it?
I have Erythropoietic Protoporphyria (EPP). EPP is due to an inherited deficiency of the enzyme ferrochelatase. Reduced activity of this enzyme causes a build-up of protoporphyrin in the skin resulting in photosensitivity.
When were you diagnosed with Erythropoietic Protoporphyria? When/ how did you first notice something was different in your skin?
I first noticed symptoms when I was around the age of 7. It kind of just started off as feeling like I was getting a horrible sunburn without the sunburn. It gradually changed to feeling like my whole body from the inside out was being covered with boiling water. In recent years I have developed getting fluid filled blisters that hurt a ton! I was officially diagnosed when I was 19 years old by a doctor.
What was/ is it like growing up/ living with this skin condition?
EPP growing up and even now constantly causes some issues, but most issues can be planned for. Pool Parties and beach trips were never fun for me as they almost always resulted in pain from the sun.
What do you do to manage the symptoms?
Like I stated above, planning ahead is going to be your best friend. Bringing sun-safe clothing, hats, gloves, umbrellas, etc.
Are there things that make the symptoms worse (i.e., can UV exposure or heat make the symptoms worse?)?
The longer I am out in the sun the more my symptoms hurt. Something most people do not think about are UV Hospital Surgery lights. I recently had surgery and had to remind them many times they needed to get a film for the light. They did but they did not have the film available at the hospital.
Is there a cure? What are your treatment options?
The best treatment option for EPP is staying out of the sun as much as possible. Other than that, there are no treatment options available.
What have you had to change in your lifestyle to manage your Erythropoietic Protoporphyria?
I have had to change the times I go outside, especially in the summer sun. During the hours that sun is at peek UV I try to stay indoors.
What is one thing you want people to know about living with Erythropoietic Protoporphyria?
Not everyone with EPP wears sun clothing or stays inside during the day. I used to have friends that turned on me because they thought I was making it up. Some EPP patients challenge the sun. They learn how long they can stay outside and try to not let EPP stop them. EPP is an invisible disease.
What are your best sun protection tips?
Honestly staying out of the sun is the number one. But right up there next to that is investing in some good sun-safe clothing, like Solbari.
How do you feel about your skin today?
I feel pretty good about my skin. Normally my skin is dry because of this so having moisturizer helps a lot. But I feel pretty good.
What would you say to others who are struggling to feel comfortable in their skin?
Do not let anxiety stop you. You are strong, capable, and amazing. You got this!
Solbari is honestly amazing. They work hard to continually make their products the best they can. They are taking the time to learn and spread awareness about skin health and how to help others who are struggling.
You can find out more about Solbari's sun protective range by clicking the blue links below:
