15-year-old Milena from the Emmedingen district suffers from an insidious disease that has forced her into a darkened room for months. Donations from the Christmas campaign could help.
In the summer of 2019, everything seemed to be okay. Milena, just turned 15, played a key role in the children’s play of the Emmendinger Theater am Steinbruch with great zeal and talent. But this summer marked a decisive turning point in Milena’s life. She got so sick that today – a year and a half later – from sheer exhaustion and pain, she can only lie in a completely darkened room. The BZ wants to support the family with a donation from the Christmas campaign.
Every sound, every contact with other people becomes torture for Milena. Ingestion of food is hardly possible. Transport to a clinic is unthinkable. Even drawing blood leads to a crash. Milena has been suffering from the multisystem disease ME / CFS for more than a year (see background at the foot of the article). The symptoms are very different depending on the patient. According to Kirsten Ihl from the Freiburg ME / CFS self-help group, only one other patient in the entire region has to suffer from the disease as drastically as Milena.
It all started with Pfeiffer’s glandular fever
“It was stress in a pleasant form,” remembers Milena’s mother of the summer of 2019. The role in the play was demanding and led to frequent events at the weekend at the end of July. In addition, hip-hop dance filled up the limited free time. In the open-air theater there was a feverish outbreak. Three days long. The first thought: a summer flu. The flu later turned out to be Pfeiffer’s glandular fever, caused by the Epstein-Barr virus. A subsequent vacation brought no rest and even had to be broken off. Milena spent the next six weeks in a darkened room with a migraine-like sharp headache. doctors suspected Lyme disease. The infectious disease is transmitted by ticks through the skin. Milena was given an antibiotic. It didn’t help.
Donation accounts for the BZ Christmas campaign
Volksbank Breisgau North: IBAN: DE61 6809 2000 0000 5550 02
Sparkasse Freiburg Nrd. Breisgau: IBAN: DE02 6805 0101 0020 0401 12-
“Milena’s body has completely broken down.” Milena’s mother
Next stop: the emergency room at the Freiburg University Clinic. Milena was prescribed painkillers there, but they had no effect. At the Josefskrankenhaus, an MRI is made on the advice of another doctor. A Munich professor advised complete calm. A mother-child cure followed. Milena could only leave the house there with sunglasses. But even worse, says the mother, was the noise. Before things got better and Milena was even able to participate in aqua fitness again. But then a norovirus caught the youngster. She collapsed and was not able to walk afterwards. In the outpatient department of the university clinic, however, no mechanical impairments could be diagnosed. Another MRI did not bring any improvement.
“As if taken from life”
“In retrospect, that was the biggest mistake,” says Milena’s mother today. After an assessment by a psychologist, a stay in a clinic in Stuttgart was recommended. Meanwhile Milena was able to walk again. The clinic, however, specializes in pain patients and treats with the approach of permanent distraction. For example with shopping promotions. For Milena it was pure stress, she kept falling over. And overnight she reacted allergically to gluten in food. “Milena’s body has completely broken down,” says her mother. In the meantime, she can only consume two foods with some consequences: gluten-free gnocchi and bananas.
Since the middle of last June, the mother has been looking after Milena alone at home. “Everything else was too much for her,” she says. For a while she had the support of a 26 year old cousin of Milena. The 15-year-old can now only spend day and night lying in a dark room. Milena’s mother describes the condition with the word pair “buried alive”. Milena’s father says she was “caught badass” and “taken from life”.
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