Down but not out: Michaela's dance with fate

style="float: right; margin-bottom: 10px; font-weight: 600;"Tue 15th Jan, 2013

On a relatively cold October day in Munich, Sabine and Stephan Hausschild* met at the Oktoberfest against all odds. Both were convinced that they were meant to be together, and well, the rest is history. They got married after two years and six years later, Michaela* was born, a beautiful, strong, chubby, healthy child who lived a bubbly cheerful life. An attractive brunette with deep blue eyes, Michaela possessed a charismatic presence that rarely went unnoticed, and whenever she spoke no one imagined they were speaking to a child - too mature and too intelligent for her age. At school Michaela did not disappoint. She was an all-rounder: she loved sports, science and math, theatre and ballet dancing. She was her teachers' darling. Her violin trainer described her as the next David Garrett.

At the age of 15 however, Michaela's health started to deteriorate. One day she would wake up violently sick, the next day she was as lively as a cricket. On occasion she would wake up too tired to do anything; on another she had rashes all over her body. If her joints were not painful or swollen, she suffered from an unexplained fever. Often her kidneys did not function properly. Michaela lost hair, she lost weight. This went on for close to four years, in and out of hospital. Tests were done to check the liver, blood sugar, kidneys, everything possible - to no avail. Nothing was detected.

One autumn, something seemed to be terribly amiss. Michaela woke up extremely tired and felt feverish for the better part of the day, but for the dynamo she was, she braved the day. The Hausschilds were part of the nearly 60% of Roman Catholics in Bavaria and Michaela went to church quite often. On this particular day, as she waited for her father to finish his business for the day, Michaela went to the famous Frauenkirche for an evening mass. Amid mass she collapsed on the pew and was immediately rushed to hospital. She had to remain there for the weekend for 'further tests'.

Devastated, her parents patiently waited for the doctor's prognosis for the whole weekend, hoping that this time around they would know what was ailing their daughter. The jolly household of Mr. Hausschild became really cold and after two long days in hospital, the physician finally summoned the parents. 'You have probably heard of cancer, diabetes or osteoporosis', he begun. 'But have you ever heard of lupus?' They patiently waited for him to continue but he waited for their response. 'Errr...' bumbled Mr. Hausschild, 'I do not know what it is, but I know it is celebrated on the 10th of May of every year because I have a sister with a birthday on that day. I think I have seen the logo somewhere, a butterfly, or something like that... that's about all I know...' 'Yes, you are right,' the doctor went on, Michaela's mother was too distraught to speak. 'The World Lupus Day' was launched 8 years ago in order to increase awareness and to improve the medical care of the victims, and the butterfly is a representation of the disease. Over half of Lupus patients develop a red, flat facial rash over the bridge of the nose and on the cheeks. Because of its shape, it is frequently referred to as the "butterfly rash" of lupus.

Systemic lupus erythematosus (SLE) is an autoimmune disorder where the immune system thinks that every thing in the body is something to be destroyed. The immune system of these people fights, for unknown reasons, against one's own body. There are many varieties of lupus and SLE is the most common type. Although a rare disease, it is believed that at least 5 million people worldwide are affected by Lupus erythematosus. According to Lupus Europe, it is estimated that 1 in 750 women suffer from Lupus in Europe with the ratio of women to men being 9:1. In Germany the number of cases is approximated to be about 40,000. The doctor went on quickly, "Lupus is the Latin word for wolf, and erythema is the Greek word for redness or blush. The disease is believed to have been observed for the first time in the 13th century, and the physician who described it called it 'wolf's bite' because of the redness across the cheeks." The term 'lupus erythematosus' was first used in 1851 by a French physician named Pierre Cazenave.

SLE affects the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. It is a chronic inflammatory disease that basically attacks and destroys every system of the body. The most common organ lupus attacks is the skin, since it is the largest organ, however, every single bodily function can be attacked. Chronic means that the signs and symptoms tend to last longer than six weeks and often for many years, and we think that has been Michaela's problem for the last 4 years. The disease can be triggered at puberty, after childbirth, during menopause, through sunlight, after a viral infection, as a result of trauma or after a prolonged course of certain medication.

"So is there anything we did or did not do that has led to all of this?" Sabine, Michaela's mother asked anxiously, speaking for the first time. "No no, Mrs. Hausschild, absolutely not," said the doctor. "In lupus, something goes wrong with your immune system, which is the part of the body that fights off viruses, bacteria, and germs (foreign invaders, like the flu)." Normally our immune system produces proteins called antibodies that protect the body from these invaders. Autoimmune means your immune system cannot tell the difference between these foreign invaders and your body's healthy tissues (auto in this case means self) and creates auto-antibodies that attack and destroy healthy tissue. These auto-antibodies cause inflammation, pain, and damage in various parts of the body.

Sensing the parents questions, the doctor went on, "While there has been progress in understanding lupus, the cause is still not known. They suspect genetic, environmental, and possibly hormonal factors to be responsible for it. The disease is not contagious, not even through sexual contact. You cannot catch lupus from someone or give lupus to someone. Lupus is not like or related to cancer." Cancer is a condition of malignant, abnormal tissues that grow rapidly and spread into surrounding tissues. Lupus is an autoimmune disease and is not like or related to HIV (Human Immune Deficiency Virus) or AIDS (Acquired Immune Deficiency Syndrome). In HIV or AIDS the immune system is under-active; in lupus, the immune system is over-active. Although a cure for the disease has not yet been found, it is highly treatable.

"Lupus is characterized by flares (a most acute phase of illness where symptoms worsen and you feel ill), and remissions (the symptoms improve and you feel better). This is what you have been experiencing with your daughter. One day she is up and about, and the next she is literally fighting for her life when the immune system decides that her kidneys are enemies. The disease can range from mild to life-threatening and should always be treated by a doctor. There is no cure for lupus, but medicines and lifestyle changes can help control it. If detected early, there are now therapies that can favorably influence the course, but some patients still die early, unfortunately. With good medical care, most people with lupus can lead a full life." The doctor added, gently smiling confidently, "I am going to do everything possible to make sure Michaela leads her normal life."

"It is a challenge to diagnose lupus," continued Dr. Heidmeier* with a sigh. "That is why it has taken this long to diagnose Michaela. Its diagnosis can take several years because it develops slowly and evolves over time. Symptoms come and go and it generally takes time to gradually accumulate enough symptoms to indicate that a multi-system disease is present. Moreover, the disease pattern of an individual patient is unpredictable, as no patient is similar to another. Many of the SLE symptoms are vague and are also present in other diseases. The disease is also known as a Great Imitator because it mimics so many other diseases and conditions. There is no single laboratory test for Lupus, and is characterized by abnormalities in many laboratory test results. Many people may have positive lupus tests-particularly the anti-nuclear antibody test - and yet not have the disease."

The Hauschilds exchanged puzzled looks, wondering what would happen if this was a case of misdiagnosis. As if reading their minds, the doctor went on, "In case Michaela does not have Lupus, we will immediately look for alternative illnesses. I think she is too young to have gone through what she has, and chances are very, very high that she is suffering from Lupus. We just think it is better to be safe than sorry,' he asserted. Dr. Heidmeier went on, "Ninety percent of lupus patients are female of childbearing age (15-44). However, men, children, and teenagers develop lupus, too. The disease does not discriminate against age or ethnic background. No two lupus patients are the same. While most experience the same core symptoms, the secondary conditions are as varied as the individuals who have lupus. Oh, and by the way, because of this, and the fact that the disease mimics a myriad of other diseases, it is also called 'the disease of a thousand faces.'"

There is no one medication that helps all people with lupus. A drug might work well in some people and not at all in others. Whichever drugs they use, either alone or in combination, it depends on the patient's particular case. As with any kind of medication, the possible side effects from lupus medication are something to watch out for. It has been 8 years now, and Michaela has a bright future ahead of her. With the disease's unpredictability, she goes for regular check-ups and monitoring. This has delayed and even prevented many serious complications. She is on medication and is often jogging in the English Garden in Schwabing. Apart from exercise, she eats a healthy diet and gets enough rest, as she has learnt that people with lupus need more rest than the average person-about 8 to 10 hours of sleep a night.

*All names have been changed to protect the people involved.

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