It is hard to imagine a life without sunshine. For 13-year-old Savannah Fulkerson, a life in the darkness away from the sun is the only life she can live. At a very young age, Savannah was diagnosed with an incredibly rare genetic skin condition called Erythropoietic Protoporphyria or EPP for short. Basically, Savannah was diagnosed with an allergy to something she loved the most, the sun. What did this mean for this California native? It meant that she could no longer enjoy sunny days at the beach, parties by the pool or a stroll in the park like a normal teenager.
If Savannah were to go outside during the day unprotected, she would instantly be in burning pain that is as painful as “burning lava.” Her skin would start to blister and become red and itchy, itching the scabs would result in scars. When 4-year-old Savannah started screaming in pain only minutes after being at the pool, her mother Andrea knew something was going on. It took them over 5 years until they finally received a proper diagnosis.
Savannah learned to cope with her new condition. She had no choice but to stay positive and continue to live her life as normal as possible, despite the mean bullies at school. Savannah pushed her bullies aside and only became stronger since finding out about EPP. She joined the cheerleading and gymnastics team and continued to do the things she loved before her diagnosis. Instead of having pool parties and going to the beach during the day, Savannah went at night. And when Savannah wanted to go outside in the sun, she wore UV protective clothing and held a large umbrella with a smile on her face. Although it hasn’t been an easy ride for the 13-year-old, she refuses to be defined by her condition.
When Savannah Fulkerson was only 4 years old, she and her family found out about her incredibly rare allergy to sunshine. Savannah’s mom, Andrea, knew something was wrong when she would take her to the pool and after only a few minutes her little girl would start screaming in pain shouting, “It burns, it burns!” After endless failed medical diagnoses, Andrea felt entirely hopeless.
For 5 years, Andrea took her daughter to multiple different doctors. Each kept telling them the same thing, saying that it was eczema, an itchy and drying skin condition. Andrea knew that it was not only eczema and even told doctors “It’s like she’s allergic to the sun.” Andrea explained the pain her daughter suffered saying that “She would just sit there and cry for hours on end.” The Fulkersons were determined to keep searching until they received a proper diagnosis.
Burning like lava
Savannah’s pain she experienced was unlike a regular sunburn that could happen after a day of lying on the beach with no sunscreen. It was far worse. She described the intense pain as, “lava being poured on me.” She told reporters that the burning sensation “burned from the inside out.” Burns would often leave savannah’s skin red, itchy and scarred after only minutes in the bright sun. Savannah’s mother would put ice bags on her daughter’s skin, or give her an ice water bath, but even that didn’t help.
It wasn’t until Andrea took Savannah to the Children’s Hospital in Los Angeles that The Fulkerson’s finally got the answer that they were looking for. After years of research and a simple blood test, Savannah was tested positive for a rare genetic skin condition called Erythropoietic Protoporphyria or EPP for short. EPP is a very rare and sometimes fatal genetic disease that causes skin to severely burn when exposed to sunlight.
What is EPP?
Although no one really knows the true cause of EPP, the American Porphyria Foundation explains that the rare disease is based from a defect in the production of hemoglobins in the human body. This defect causes harmful compounds to be released. Sufferers of EPP can experience symptoms such as “swelling, burning, itching, and redness of skin.” In addition to the list, “mild to severe burning pain” is a typical symptom.
Gaining recognition on TV
EPP was even featured on an episode of the hit TV show, House called ‘Finding Judas.’ The episode showed a little girl named Alice who began to scream in pain while on an amusement park ride. At first the team of doctors thought it was caused by her gallbladder and did an operation on the girl. It wasn’t until the end of the episode when one of the doctors realized that she had an allergy to the sun, and diagnosed the six-year-old with EPP.
Confined in the darkness
Savannah and her mother, who live in the sunny state of California, were devastated at what the diagnosis meant. For Savannah, her disease meant having to stay confined inside the dark house all day. It meant not being able to go to the beach with her friends, or even in her own pool in her backyard- until after the sun went down. Savannah, who was typically a ball of energy, was heartbroken.
After Savannah was diagnosed with EPP, she had a tough time taking the news. She was angry and confused and didn’t understand how she, of all people, could have developed such a rare condition. She spent days indoors cursing her new diagnosis. Savannah struggled to keep her head up. Savannah recalls, “It was really hard, I got really frustrated and mad. I did say, why me? Why does anyone have to have this?”
Dark and cloudy
Savannah, who is now a 13-year old girl, struggled explaining to her friends her new diagnosis. She explained to them that she can no longer go outside with them during the day, and can no longer go with them on trips to the park or beach. “My friend’s definition of a normal day and my definition of a normal day are way different.” Savannah says to an ABC reporter, “Her day is bright sunny and beautiful and mine is dark cloudy and rainy.”
When Savannah does step outside her house, she has to wear certain clothing that protects her from UV light. Her outfit includes: Long sleeves and pants, gloves and a giant hat to cover her entire face from the sun. She also has to carry a large umbrella everywhere she goes, to ensure that no sun touches her skin. She has to be very careful when walking in sunlight, because even a few seconds of exposure can put Savannah in a great deal of pain.
Dealing with bullies
Being a young girl with a rare disease can unfortunately often lead to bullying from other kids. Savannah admitted in an interview with ABC, that she is not stranger to getting bullied. Other kids in her class would often call Savannah hurtful names such as “old lady hands” because of the red burn marks on her hands, or “umbrella head” because of her large hat. In the beginning, Savannah let the bullies get to her, but now she is stronger and tries to ignore them as best as she can.
Living a life in darkness is no way for a 13-year-old to live. Unfortunately, there is no cure for her condition and Savannah has no choice but to adjust to her new life in the shadows. Even though Savannah tries to keep her head up ,she is still looking for a cure one day. “I wish they would find a cure because I don’t like living like this. It’s really hard.”
Despite her disease, Savannah still stays just as active as any typical 13-year-old girl. She does not let her condition effect her happiness. Her hobbies include riding bikes, swimming in her pool after sunset, and jumping in her giant indoor trampoline. She is even on both the cheerleading and gymnastics team. “I try to think positive.” Savannah says, “I know kids, somewhere else, have way worse than me.”
Even though Savannah’s life has taken a drastic turn, she and her family are both grateful for getting a final diagnosis. It now means that the family can prepare and prevent bad burns from the sun. Savannah’s parents make sure to keep windows in the house and car tinted, since even exposure through regular glass can cause her pain. “At least we know what it is; we know what to do to keep her outbreaks from happening.” Savannah’s mother explains, “That’s been huge.”
Life after dark
Savannah still enjoys the outdoors, despite her condition. She just has to wait until the sunsets. She still goes on trips to Disneyland with her friends and has her friends over for parties by her pool. She just has to do all this after sunset. “EPP doesn’t define me,” Savannah says firmly. “I’m still going to go to amusement parks. I’m going to do everything I possibly can.”
Not alone after all
Although Savannah’s condition is rare, she is not the only one. In fact, a whole summer camp has been formed in New York for kids similar to Savannah. Camp Sundown is a camp for kids who suffer from Xeriderma Pigmentosum or XP. Similar to EPP, XP can cause serious and life-threatening burns when exposed to sunlight and can even cause Cancer. Sufferers of XP cannot be out in the sunlight, and when they do go outside need to cover up entirely like Savannah.
Turning the night around
Camp Sundown is a camp for kids who suffer from XP. Located in New York, campers are able to enjoy all the typical summer activities for kids, just after dark. “When I am in camp, I don’t feel left out.” A young camper says. Activities include: attending baseball games, playing golf, horseback riding, hiking, swimming, campfires and more. “We do normal kid stuff,” says Caren Mahar, the Co-Founder of Camp Sundown, “We just turn the night around and do it at a different time of day.”
EPP in Transylvania
EPP is not a new condition. In fact, EPP dates as far back as the mid 1400s. Some historians speculate that Vlad the third of Transylvania, the inspiration for the story of Dracula, also suffered from EPP. Which also inspired the whole “vampires can’t go in the sun” theory that we see in most popular vampire TV shows and movies today such as Vampire Diaries and the infamous Twilight saga.
Savannah and others with EPP, should not lose hope on a cure yet. In fact, doctors have already discussed a treatment option with a drug called afamelanotid. According to Dr. Robert Desnick, treatment with this drug should “increase the melanin in your skin” and make you “tan in a couple days.” Desnick explains that the increase in melanin will cause the patient’s skin to get tough and will act as a protectant from the sun’s harmful rays.
The new treatment sounds promising, but Savannah and many like her in the US will have to be patient. At the moment, afamelanotid is awaiting FDA approval and is so far available only in Europe. Dr. Desnick states that this treatment is most likely Savannah, and other EPP sufferers only chance for a cure. “At the moment, this is the only drug that is really effective as shown by the clinical studies.”
Many similar symptoms
Although medical professionals do believe that less serious versions of EPP can exist, there are many other skin conditions that have the same symptoms as EPP. This can make it very confusing and difficult when diagnosing a patient with EPP. Savannah’s doctor, Dr. Minnelly Luu from Children’s Hospital Los Angeles recommends patients to seek a “dermatologist who specializes in children or a porphyria specialist” in order to receive the most accurate diagnosis.
Social media queen
The 13-year-old has quite an active presence on social media. On her Instagram account, which has thousands of followers, Savannah proudly writes “I have a rare skin disease EPP, I’m basically allergic to the sun, but I won’t let it define me.” On her page you will find hundreds of photos of Savannah next to friends and family at the beach, pool and cheerleading practice. It is clear by the photos that Savannah is a very popular and well-liked girl.
Since appearing on ABC news, Savannah has made quite a fan base. On her YouTube channel, The Savannah Fulkerson, she uploads video Q&As that give viewers a chance to ask questions about herself such as “what is your biggest fear?” and “what is your favorite dog breed?” One viewer asks Savannah “Is there or will there be any cure for EPP in the future?” Savannah, on a more serious note, explains that there is no real cure besides the treatment afamelanotid which is only available in Europe.
Savannah is very close with her older sister Lily, who does not carry the same skin condition. Even though it must not be easy watching her sister live a normal life in the sunshine, Savannah does not have one ounce of jealousy and sees her sister as her best friend. On her Instagram account, Savannah posted a picture of her sister dressed for prom and proudly writes “My sister had her junior prom last night!”
Bright future ahead
Despite everything Savannah has had to deal with, she still sees herself having a very bright and sunny future. Unlike some with her condition who would sulk in the darkness all day and move to a dark city, Savannah has no plans on leaving sunny California. “When I get older, it’s not going to change what I do,” says Fulkerson, “It’s not going to tear me down, it’s going to build me up. I still want a house on the beach one day.”