Important tips for water safety
Learn important water safety tips to ensure a fun and safe summer for the whole family.
For most people, the arrival of spring and summer means picnics, beach trips, and other fun in the sun. For Jennifer Linares, that means taking extra precautions to avoid triggering a life-threatening sun allergy.
Linares, 24, told USA TODAY, “I haven’t been to the lake, the beach or the pool since before I was diagnosed, mainly because I’m scared.”
Although worse during sunny months, Linares’s sun sensitivity makes checking her UV index and preparing her body for the elements a year-round challenge.
In Virginia, where she lives, when the UV index is above 2, which is typically from 10 a.m. to 4 p.m., she avoids being in the sun, even sitting next to a window with sunlight.
“Otherwise, the skin will completely burn and peel,” she said.
If you have to go out, be prepared. This means applying plenty of sunscreen (including in unexpected places like under your fingernails and in the folds of your ears), wearing UV-blocking clothing, sunglasses, a large hat, and carrying a UV-blocking umbrella. Her car is also equipped with dark window tints.
Jennifer Linares’ life-threatening diagnosis
Linares didn’t originally have a sun allergy. Growing up, she was perfectly healthy and active, even working as a lifeguard at one point.
But in 2021, when she was a junior in college, she began experiencing “a series of really strange symptoms,” ranging from strange skin rashes to unexplained muscle weakness.
“I was really confused. I went to the doctor multiple times. No one could figure out exactly what was going on,” she said, adding that weakness and fatigue “wasn’t really her personality.”
After seeing a specialist, she received an official diagnosis. Dermatomyositis is a rare autoimmune disease in which “the immune system mistakes the skin and muscles for invaders” and attacks them, causing muscle atrophy and photosensitivity, Linares explained.
The severity of photosensitivity varies depending on the person diagnosed, but Linares’ case is extreme.
“You can tell right away if the sun is hitting your body,” she said. “I feel sick and dizzy. My skin feels like it’s burning and stinging.”
The exact cause of dermatomyositis is unknown, but certain genetic changes may increase the risk of developing dermatomyositis, according to the Mayo Clinic.
She explained that she is on intensive immunotherapy for an autoimmune disease, but her doctor has made it clear that “the sun is stronger than any drug I will ever take.”
“Once you’re exposed to something so intense, it takes away all the effects of the drugs in your body,” she says. “You quickly begin to notice that you are starting to weaken, which can range from extreme fatigue and fatigue to complete atrophy, requiring you to return to rehabilitation.”
Exposure to the sun not only worsens autoimmune symptoms, but also leaves you with “deep, sticky burns” that “take forever to heal.”
“Then, over a few days, the skin slowly peels off completely and a blister forms in the area. The blister then heals on its own and eventually deflates,” she explained. “But in the meantime, my skin is almost cratered and I end up with really deep scars that I have to tend to and cover and clean.”
She has a weakened immune system, so any infections she might contract are “extremely dangerous.”
“My body has a really hard time protecting itself. I’ve had sepsis in the past just because my wounds weren’t cleaned properly,” she said.
According to the Cleveland Clinic, dermatomyositis is fatal for about 5% of people diagnosed with dermatomyositis.
“I felt very isolated and very lonely.”
Linares, who has never met anyone in her hometown with the disease because her disease is rare, posted it on TikTok in hopes that it could resonate with someone.
“I felt so alone and isolated for so long…and I quickly found other people who had the same symptoms,” she said, adding that she has connections with people who have other variations of the symptoms, not just her version.
“It was very comforting, and there were a lot of people who reached out,” she said. “It gave me a lot of emotional relief to understand that I wasn’t alone and that there were other people going through the same pain.”
Now, she continues to post about strategies to stay safe in the sun, and hopes to spread awareness about the condition while also helping others feel less alone. A recent TikTok video she posted showing all the precautions to take against sunburn has garnered over 12 million views and 1 million likes.
“I’m happy to be able to help,” she said. “When I got sick, I felt like I lost a big part of my purpose. But this gave me that back. It’s been very helpful for my mental health, and I hope it is for others as well.”
