A cold is annoying, but fortunately not permanent. If it runs good cold and cough gone after a few days. What is already an abomination, is for Michaela W. the smallest Evil. Developed by the seemingly harmless infection fever, must you to the hospital. “I have no immune system that protects me,” says the 45-Year-old from Hessen, Germany.
Binding skin inflammation, intestinal disorders, lung and heart muscle inflammation with subsequent life-threatening blood inflammation, intoxication, and sinus – all of which she has already done at least once. A look at the Files piled up on Michaela’s table, shows that your medical history is long, the disease is complicated.
And it has left its mark, Michaela is conspicuously thin. However, even though she’s been in almost two decades, permanently sick, she usually in a good mood. A strong personality.
“The Doctors have asked me in the clinic how you can be so sick and still so good on it,” she says. “It’s no use to complain.” 13 years of medical puzzles in the whole of Germany about the trigger of your disease. Specialists there is not in the Hessian small town, that is why Michaela travels to doctors in Marburg, Mainz, Freiburg and returns to the 70,000… miles. “That was one of Doctors,” she recalls.
13 Years Of Guesswork
The Suffering begins in 2002 with a headache. Because Michaela is just 28 years old. Career, marriage, children – that’s the Plan. But after the wedding, neck and joint pain, in the morning, she barely gets out of the bed pile up. Investigations in rheumatological login remain without a diagnosis. “I felt like a Hypochonderin,” says Michaela. Finally, your house sends a doctor in the 100 km distant University hospital in Marburg.
The Doctors diagnose a disease with a complicated name: a auto immune hemolytic anemia from the heat type (AIHA). In the body antibodies that destroy the red blood cells and the oxygen supply to the body to inhibit produces. To suspect at this time, neither Michaela nor the Doctors that AIHA will be only one of many diagnoses.
It is a complex therapy with cortisone and drugs else cancer patients in chemotherapy begins. The cortisone Michaelas body retains water, your weight increases from 70 to 90 pounds. Movements cause her severe pain, you can bend over hardly. Because it has too few antibodies to be administered to your Doctors by Infusion.
“I was physically and mentally at the end”
But nothing helps. Instead, infections, your sense of smell and your taste can make sense to pile up. “Without a nasal spray, nasal irrigation, nose and throat doctor visits and tears set liquid I couldn’t live at all,” she says today. Because you don’t feel able to work, goes to Michaela in early retirement. She wears it with: “That was stressful, but it was the only way.”
In 2011, a set in addition to violent cases. At this time, Michaela is already the suspicion that there is something wrong with your immune system. However, your doctor dispels the concerns and pushes the low antibody value, diarrhoea and weight loss side effects of the therapy. “In my medical history that was the hardest time, I was physically and mentally at the end,” she says.
2014 Michaela weighs only 48 pounds, at a size of 1.70 meters. Because of the cases she leaves her house only when her stomach calmed down and a toilet in the vicinity.
Also Michaela’s desire to have children does not negate the disease. But she and her husband keep the Confidence and opt for a nursing child. In March 2012, to take a six-month-old boy. Your son, says Michaela, enriches your life until today.
The Solution To The Puzzle
Then the next diagnosis: celiac disease follows. By inflammation of the gastro-intestinal tract of Michaela bowel disappeared villi in your intestines can barely absorb nutrients from food. From now on, no Gluten, the following applies: more. Breaded meat and fish, most of the finished dishes, Snickers, Twix, beer, liqueur, mulled wine, regular pasta and many other delicacies – everything taboo. “Food for me was from the time there is no pleasure more,” she recalls.
She begins to bake her own bread, her son and her husband need to store your food in an extra closet. Out of desperation, Michaela searches the Internet for explanations for their disease and will be able to find.
On the side of the German self-help Congenital immunodeficiencies e. V. (dsai) pushes you to a list of symptoms that reflect your illness. Email asks you to two celiac disease experts advice. A genetic test confirmed: Michaela is not suffering from celiac disease. The disappearance of intestinal villi can be explained a doctor in Mainz, Germany, by inflammation of the intestine, which he attributes to a possible immune defect.
The expert advises Michaela to apply to the immunodeficiency outpatient clinic in Freiburg. After 13 years, the Doctors diagnose a variable immunodeficiency syndrome, Common Variable immune deficiency (CVID) is called. The body of the Affected do not produce enough of the functioning of antibodies, called immunoglobulins. In Germany, 20,000 people ill. Thus, CVID is very rare.
Only a Hundred Doctors know the diagnosis
The first symptoms can already occur in childhood. In the other, they show themselves only in adulthood. “CVID has very different and individual characteristics,” explains the expert. Michaela suffers from a particularly complicated Form. Instead of protecting you from viruses, bacteria, and other germs, the immune system attacks Michaelas body. Your anti-bodies will be destroyed, Michaela is, therefore, still often sick.
Only 2000 diagnosed cases in Germany. Bodo Grimbacher, Michaela’s doctor and Scientific Director of the centre for Chronic immunodeficiency in Freiburg, out of 5000 Affected. “Some are ill, but the symptoms are not so acute and are therefore not recognized by the family doctor,” explains the expert.
The cause of the Defect is not clarified until today. Specialists suspect that the disease is congenital in 30% of cases. On average, may reach up to diagnosis in Germany four to five years, so Grimbacher. The Federal chamber of physicians, it was the end of 2018, more than 500,000 Doctors in Germany. Grimbacher is estimated that only one Hundred of you are familiar with the disease. Ten to twenty are specialists in the field. “This is a poverty certificate,” he says of the Numbers.
Living with immune deficiency
Meanwhile, Michaela has lived for four years with the diagnosis. Today, she is 45, early pensioner, severely disabled and has a seven-year-old son. Your positive attitude is your remained. The missing anti-body injected himself at home. “My quality of life has increased significantly since then,” she says. Once a year she drives to control to Freiburg. The missing anti-body, she sprays on a regular basis.
Prospect of cure does not exist yet. The contact with pathogens must be avoided Michaela, as well as it goes. That means no shaking hands, sick people avoid timeouts treat. Your son comes home from school, he changes his clothes. He goes out to Play, he attracts again his “Outside clothes”. To his friends he explained: “My mom has a disease that never goes away.” As hard as it sounds, as simple it is.
To wash the hands and shoes in front of the door, not understand still all. And also, that it stays with a cold or a stomach flu rather be at home, some in the circle not yet penetrated.
In order to increase awareness and to raise the awareness of people involved Michaela in the case of dsai, on their Homepage they discovered their disease. Per year apply to the Thousands of people with questions to the club, Michaela is the regional Manager for issues available. In addition, she gives lectures in front of Doctors, so that other Affected the year-long search for the diagnosis spared.