Nine-year-old Tayma Salim enjoys drawing flowers, playing with her brother, Arslan, and the color pink. However, unlike other children her age, her summer days are far from carefree. While most kids might run barefoot or splash around in a pool, Tayma’s reality is vastly different due to a rare and painful genetic condition called Epidermolysis Bullosa.
Tayma suffers from severe recessive dystrophic EB, one of the most severe forms of the disorder. EB causes her skin to blister and scar with even the slightest friction or injury. The condition is so severe that something as simple as a bug bite or sunburn could cause her excruciating pain. As her mother, Zineb Laalej, explains, “The weather is hot, the skin is very fragile,” which means Tayma spends most of her summer indoors, avoiding the risks that could harm her sensitive skin.
EB, often referred to as the “butterfly disease,” leaves the skin as fragile as a butterfly’s wings. To protect her skin, Tayma wears special bandages and a thin full-body jumpsuit. Her condition requires constant care, and as Dr. Diana Reusch, the director of the EB Clinic at UMass Memorial Medical Center, tells PEOPLE, “Every shower and bandage change is exquisitely painful. Every blood draw is terrifying. But she puts on a brave face every time.”
Tayma’s symptoms appeared soon after birth. Zineb recalls that when a nurse tried to take Tayma’s temperature, her skin came off. “Her mouth was suddenly covered in blisters,” Zineb says, recounting the moment when she first realized something was wrong. Tayma was immediately taken to the NICU, where she stayed for 20 days. Zineb, just 23 at the time, spent the long days crying with her husband, Tarik, waiting for answers. When doctors eventually diagnosed Tayma with EB, they explained that there was little they could do to help, other than protect her skin from further blistering.
The most significant wound on Tayma’s body is on her back, and it has not healed for seven years. Zineb explains, “The wound is very deep, and it’s not healing.” Dr. Reusch, who has been treating Tayma, explains the challenge of treating EB: “We don’t have a treatment that can prevent blisters from forming in the first place. We also don’t have a treatment that works from the ‘inside out.'” While there are some new treatments, Dr. Reusch emphasizes that a cure for EB remains elusive.
Tayma undergoes regular checkups every two weeks. When asked about the pain, she says, “Sometimes it’s bad. Sometimes it hurts.” But when the pain becomes unbearable, she turns to her mother for comfort. “She just makes it better, and then she wraps it, and then it doesn’t hurt anymore,” Tayma explains.
Because of the severity of her condition, Tayma needs morphine and ibuprofen to manage the pain. Bath time is particularly difficult for her, and creams, surgeries, and skin grafts have not been effective. Her mother says they simply cover her skin in Aquaphor and wrap it in bandages to prevent further damage.
EB brings other complications as well. Dr. Reusch points out that those with the disorder face risks of infection, malnutrition, and even squamous cell carcinoma. In some cases, repeated blistering and scarring can cause fingers and toes to fuse. “Everyone with EB is so different,” she says, noting that the severity of the disease varies widely. While some people with a milder form of EB can lead active lives, others, like Tayma, experience intense pain from even the slightest touch or movement.
The condition’s severity also impacts the lifespan of those affected. “There is a serious risk of infection at any age for patients with EB,” Dr. Reusch says. “Historically, many with severe disease pass by age 30, but we are hopeful for improved outcomes with new therapies.”
For Zineb and Tarik, the most difficult part is not the physical pain, but seeing their daughter struggle emotionally when others don’t understand her condition. Zineb says Tayma’s heart breaks when children cry upon seeing her. “Some kids are different,” she tearfully explains, adding that Tayma is unable to play on the playground due to the risk of injury.
Despite the pain and emotional struggles, Tayma’s parents continue to offer her love and support. Zineb says, “Every morning, she says, ‘Mom, give me a hug, give me a kiss.’” She describes her daughter as “strong” and “brave,” and makes sure Tayma knows how beautiful she is, both inside and out.
Through the trials and hardships, Tayma and her family continue to fight against the odds, hoping for better treatments and a brighter future.
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