Layla can no longer walk. She can no longer speak either. Every noise and every strange smell triggers agony in the 25-year-old woman, who only leaves her room in a wheelchair when she has to go to the toilet. She is in constant pain and can only eat liquids. The young woman’s dramatic health worsens with each passing day, while her mother wages a desperate battle against the bureaucracy and lack of empathy of the German health care system to save her child’s life. Now it’s the people of Wiesbaden who are giving her new hope. Layla’s mother is raising money for a blood wash she can’t afford herself. She cannot say with certainty whether this experimental treatment will help. But she has nothing to lose, because so far there is no therapy for her daughter’s suffering.
It is a cloudy noon in the Nerotal. Sanja Bauer is sitting in her hair salon trying to find the right words to describe what is happening to her daughter. “It started in 2020 with a racing heart, and then she went to the ER five or six times. But nothing was ever found there,” she describes the beginnings of a martyrdom. In a Wiesbaden clinic, the doctors diagnosed what is known as inadequate sinus tachycardia (inexplicable heart palpitations with little activity) and prescribed her medication. “It worked well,” the 59-year-old master hairdresser recalls, but then her daughter’s health deteriorated again. When dizziness finally set in, the mother experienced a true odyssey with her daughter in search of help.
“No one knew what she had,” Sanja Bauer recalls. In the spring of 2021, the young woman could only walk with a walker. The result was more doctors and even more diagnoses. “Then it was said that it was the psyche,” says the mother. As she talks, she wrings her hands. “We did everything possible: hypnosis, acupuncture and many other things, but it didn’t work.” In the summer of 2021 she got a wheelchair for her daughter.
In the spring of this year, Layla Bauer was examined for several days at the Helios DKD in Wiesbaden, and the family received a bitter diagnosis. “The neurologist found that she had pots on the one hand, and then there was ME/CFS,” says Sanja Bauer, adding a little more quietly: “The doctor said that he was very sorry, but there was no treatment option.” Pots is the acronym for postural tachycardia syndrome; the patients suffer from an increased heart rate, drowsiness and dizziness when standing up. The cause is unknown, but is probably related to the central nervous system. ME/CFS is a serious neuroimmunological disease that often results in a high degree of physical disability. A quarter of the patients are unable to leave the house and many are bedridden, the German Society for ME/CFS reports on its website. According to this, around 250,000 people are affected in Germany, including 40,000 children. The disease is poorly understood and often takes years to diagnose.
The next blow came at the beginning of October this year: the young woman could no longer get out of bed. “At first I didn’t understand that it could happen from one day to the next,” her mother recalls. “Then she said: Mom, I feel like I’m dying. Everything is so loud and smells so awful. The dizziness is so severe that I can no longer sit up.” Layla Bauer now has care level 4.