Ehlers-Danlos-Syndrome The cook who eats nothing and will never eat again
It is 2015. In front of Loretta Harmes on her plate are potatoes and a piece of chicken – the last normal meal she will eat. In a few minutes, a familiar pain will run through her stomach. As it always happens as soon as she eats or drinks something.
Normally, Loretta Harmes takes her food in liquid form through a tube, but not on that day six years ago. A bowel specialist had asked her to eat solid food because he wanted to understand why eating and drinking caused her such pain.
Ehlers-Danlos syndrome Razor-thin skin, buttery joints – two sisters, one rare disease
A rocky road to diagnosis
At 19, the young woman could no longer stand her pain after eating. "It went dramatically downhill, she tells the BBC "I couldn’t eat or go to the toilet. And the next five years became a nightmare I couldn’t wake up from." It all started with a doctor, the cook reports, who thought her anorexia had returned.
The following years she forced food into herself despite unbearable pain – gaining weight was the only way out of the clinic for eating disorders. But she developed a rage at the situation and at herself. To BBC, she also mentions she tried to commit suicide several times to end her own suffering. Hopelessness had been too great.
The last meal brings hope
Years later, Loretta Harmes is faced with potatoes and chicken. It is their last meal. The intestinal specialist finds that the young woman’s stomach is partially paralyzed and cannot empty properly. He diagnoses hypermobile Ehler-Danlos syndrome (hEDS) – a genetic condition that can manifest in many different ways.
Loretta’s other symptoms include migraines, fatigue, palpitations and neck pain. The disorder is relatively understudied and hEDS and the 12 other forms of Ehlers-Danlos syndrome are still not fully understood.
The Ehlers-Danlos syndrome
Ehlers-Danlos syndrome is one of the rare diseases. Genetic changes in the structure of connective tissue are responsible. Since connective tissue is found almost everywhere in the body, the symptoms of the disease can be correspondingly diverse. Mainly affected joints, skin, blood vessels and internal organs.
The disease includes a group of 13 types. For example, the connective tissue in the wall of the intestine may be damaged, making it harder for food to flow through the digestive system. Gastroparalysis may accompany it.
Common symptoms of the different types of the syndrome are generally characterized by joints that stretch further than normal (joint hypermobility), skin that stretches further than normal (skin hyperextensibility), and tissue fragility.
For more information, visit the website of the German Ehlers-Danlos Initiative e.V.
Enjoy with eyes and nose
Six years after her last meal, Loretta Harmes knows she will never eat or even drink a glass of water again. She now receives only parenteral nutrition. For 18 hours a day, fluids are given directly into the bloodstream via a bag. A tube runs through her chest directly into a large vein that feeds into her heart.
"The reason I’m not freaking out about not being able to eat is because I’m so relieved to be free of pain after so many years", Loretta tells BBC. "The cooking itself is what gives me joy", she continues, adding, "Being in the kitchen is a real creative outlet for me." Inhaling the smell of a bubbling sauce triggers memories of the taste and her eyes can judge the depth and richness of the sauce.
The love of cooking
Loretta Harmes started cooking at the age of 11. It is her great passion. She had to stop her studies at a cooking school because of her pain, but when her health improved, she started cooking again. Together with her roommate Amy, who is a professional photographer, she fills an Instagram account with pictures of her creations and does educational work.
She’s the cook who can’t eat. And a cook who is therefore even more creative with her ingredients and spends even more time in preparation and planning. Other people who are tube fed chew the food and spit it back out to have the taste in their mouths. The only thing the cook misses, however, is not the taste, but the memories and the meaning of food. She tells BBC, "A lot of what we do in our society revolves around food – I still feel like an outsider sometimes. But I still go to people’s birthday dinners or "for a coffee or a drink" – I just can’t participate in actual eating and drinking."
Help, advice, contact points for eating disorders
On the pages advice4kids and youth counseling-online young sufferers can first vent (simply write in the forum). Understanding caregivers give everyone individual answers and are committed to finding the right way out of the misery for everyone.
German Federal Center for Health Education
Consulting telephone: 0221 – 89 20 31
The website offers detailed information on the topic, a test of one’s own eating behavior, and the opportunity for personal counseling or telephone counseling – anonymously and free of charge:
Phone: 089 – 219973-99 (Tue 9-11, Wed 17-19)
In addition, there are extensive offers for relatives.
The website is a modern and unusual educational website of a project called "Anorexia – Today everyone is anorexic" and is meant to be a countermovement to the current trend of reporting. Affected persons have their say here and describe their point of view. With testimonials, interviews, videos and other interesting aspects.
Counseling and treatment
The Schon clinics are represented throughout Germany, including the Roseneck psychosomatic clinic (Chiemsee). For information and registration, you can call the Eating Disorders Department at.