Lupus erythematosus, Sjögren's syndrome, Antiphospholipid syndrome, Connective tissue diseases
Patient guides by Dorothea Maxin published by Verlag für Neue Medizin

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My life, my journey...


Born in mid-August 1960 in Darmstadt
Silesian mother
East Prussian Father

         "I am well aware of my ancestry origins in historical East Germany. My home is somewhere between Wroclaw (part of
         Poland since WWII) and Königsberg (Kaliningrad, which is part of Russia since WWII) ... I am a typical child of the 'second
         generation' of displaced persons. The older I get, the more I come to realize how Prussian I really am."


Protestant


December 1966 - December 1978: Schuldorf Bergstrasse, Seeheim-Jugenheim
Cooperative comprehensive school (orientation level and school course system)
German and music lessons Arnold Werner-Jensen
Final grade of Abitur: 1.2 (equal to grade A). Exams in Biology, English, Philosophy (subject: philosophy of history/Wilhelm Diltheys's theory of understanding, teacher: Dr Rudolf Löbl), and Mathematics

         "Instead of learning everything by heart, we learnt how to debate, develop arguments and interpret thoughts. This school
         prepared me for life."


1978 and 1979: Summer jobs: soldering boards for toy trains


January 1979: Internship at the university library

Eingeborene


January 1979 - June 1979: Au pair in Paris. Living with a host family in Saint-Germain-des-Prés.


October 1979 - October 1987: Study of psychology at TH Darmstadt (Technical University of Darmstadt)

         "I was fascinated by the field of psychology. So I postponed the idea of studying medicine."

Attended lectures and seminars in History and Philosophy (Prof Gernot Böhme)
Subsidiary: Sociology (subject of exam: Max Weber's 'Protestant Ethics' Prof Helmut Dahmer)
Manifold activities as student assistant in various projects and at the library
Learning programming languages such as FORTRAN
Student representative at the Department of Psychology
Diploma thesis: "Der Schmerzen im Denken und Erleben des Kindes"(The concept of pain in children's thinking and experiencing) (Prof Thomas Bernhard Seiler)
October 1987: Diplom-Psychologin (graduate psychologist) with honours


During my study of psychology and over a period of several years, I joined Dr Erhard Weiher (Honorary Dr) at the catholic campus ministry in Darmstadt. Among other activities, I also participated in the student exchange program, whereby I travelled to Israel, took an active role in a drama group and worked at the parish council. I also attended self-awareness seminars (Theme-centered interaction) and numerous socio-political events, for instance with Cardinal Karl Lehmann, Horst-Eberhard Richter and others.

         "We, the people of 1978, were all 'green' at heart. I participated in an event organized by Herbert Gruhl in 1979 as well as
         in the demonstration against NATO's decision to deploy more weapons, which was held in Bonn in 1982. I was not part of
          the protest against the new runway at Frankfurt Airport and the radioactive waste repository in Gorleben - in my opinion
         it is wrong to obstruct the technological progress. Instead, we should demonstrate practical ways and develop possible
         alternatives. Three days after Bill Clinton won the US election, I applied for membership in the SPD (Social Democratic
         Party of Germany). I clung to the hope that Germany would manage to free itself from its inflexibility caused by the then
         German Chancellor Helmut Kohl's so called 'intellectual and moral turning point' . In my opinion, the era Kohl (1982 until
         1998 - a 16 year period) was the worst post-war period in Germany concerning domestic, educational and economic policy,
         with of course the exception of the German reunification in 1990. Today, Germany does well due to the "Agenda 2010"
         (a series of reforms planned and executed by the SPD-B'90/Greens). I think the program of the political party The Greens
         lacks of social aspects."


During my university studies of psychology, I also joined the Darmstadt Women's Centre and participated in a writer's group for women.

         "At that time, I never recited my own texts. I never considered them important or very successful."


From the age of 21 to 23: psychotherapy with a female therapist.

         "This experience changed my life."


Summer jobs at the Merck KGaA company


1980 - 1996: worked as a hospital porter and worked in nursing services in different hospitals. My duties included working during the night watch over a period of six years

         "I have seen people in all conditions and states. My favourite job was working in the night shift. I loved being employed at
         the hospital. Unfortunately, when I realized that due to joint problems I was no longer able to walk as much as I used to
         I had to give up the job in the nursing services."


1985: During the Uni exam period, the disease broke out, causing the following symptoms: diarrhoea, food intolerance, conjunctivitis and malaise. Diagnosis: irritable bowel syndrome with lactose intolerance.

         "Up to this time, I had an unshakeable positive belief in scientific medicine. It was after I had been futilely trying to
         receive a systematic and plausible diagnosis for about a year, that I realized that the combination of the aspects 'young
         woman, vague disorders and study of psychology' would be sufficient for the doctors to simply dismiss me with the
         diagnosis 'psychosomatic'. After three years of suffering the agitations and disappointments of not finding competent
         medical help, I gave up trying to get a plausible medical explanation for my disorders. I no longer wanted to be at the
         mercy of doctors failing to make a correct diagnosis."


From the age of 26 to 28: psychotherapeutic assistance due to the vague disease.

         "The psychotherapist was a doctor and graduate psychologist. He relied on my helpless statement that 'all disorders were
         diagnosed medically'."


From my late twenties to my mid-thirties, I often took care of my acquaintances' children.


Beginning in April 1988: Study of medicine

         "... because I had this feeling that I have not yet learned enough about the human being."


1988/89: Serious infection; diagnosis and treatment took about a year. A selective deficiency of immunoglobulin M became apparent.

         "... a warning shot across the bows which brought to my mind how serious this disease was."


1990: With hopes to receive a systematic diagnosis of my disorders, I presented my case to the immunological outpatient department of a university hospital. ANA were slightly positive - another medical examination was not arranged and not even suggested.

         "I consulted medical books to find out what ANA meant. They referred to a strange and serious disease called 'systemic
         lupus erythematosus'. That could not be possible. According to the doctors, I had only a very mild illness without any need
         for treatment."


1990: At my own request, four-week stay in the psychosomatic hospital in Bad Herrenalb where I met Walther H. Lechler.

         "I wanted to do everything to get to the bottom of my symptoms and get rid of them. After four weeks, I realized that
         I could not learn anything more about my problem in the psychosomatic hospital. It turned out later that, while staying in
         this hospital, my leukopenia had reached a new low of 2,800 per µl. Nevertheless, the doctors did not look for an
         explanation - diagnosis: irritable bowel syndrome. Based on the reports of several other patients about staying in
         psychosomatic hospitals, I began to doubt about the medical and scientific approach in these facilities. After staying in
         hospital, I accepted my destiny to live with something unexplainable."


1990: One-year additional training ("Jeux dramatiques")


1990/91: Three voluntary medical clerkships at the university hospital in Jena


Since 1992, I have been working in a facility for disabled people and since 1996 exclusively part-time.

         "When you meet mentally disabled people, you recognize immediate emotions and spontaneity. We non-disabled people
         lack of both aspects. Thanks to the part-time job, I am entitled to a pension. For this, I am very grateful."


From 1990 to 1995, I participated in the Darmstadt musical association choir under direction of Hans Drewanz.


In the early nineties, I stopped my studies of medicine at the Uni due to poor health caused by the undiagnosed disorders.

         "I was no longer able to concentrate properly. I felt that my overall condition was changing. Furthermore, my physical
         ability began to decline. So I decided to wait; hoping for an improved health ..."


Since 1994: Electric bicycles

         "Riding my racing bicycle to work 6.5 kilometres uphill at half past five in the morning got too exhausting. The only
         alternative to a petrol-powered vehicle or bicycle was an electric one. I did not want to give my money to some oil sheikhs
         who use it for gilding their water taps and oppressing their wives. I tried the CityEl (a 3-wheel lightweight electric car), an
         electric scooter and electric bicycles. Back in 1994, electric bikes had already become a real alternative for driving in the
         city and its outskirts. The only thing I still need is a solar power system."


Since June 14, 1994: Patient of Prof Peter Pfannenstiel due to latent hyperthyroidism accompanied by multifocal thyroid autonomy. Radioiodine therapy in Belgium.

         "Meeting this doctor gave me back my belief in medicine and changed my life."


1995: Clinical psychologist, title awarded by the BDP (German Psychological Association)

Eingeborener


April 1995: I presented my case to an internal rheumatologist on the recommendation of Prof Pfannenstiel. A single clinical examination and one blood sample test done by the right specialist, were sufficient to make the diagnosis 'Connective tissue disease' which was soon after specified as 'systemic lupus erythematosus together with Sjögren's syndrome'.

         "The diagnosis was a shock and a huge relief at the same time. About a year later, I managed to recall the past ten years
         and deal with them emotionally. The psychological term for this process is 'cognitive restructuring'. The worst thing about
         the past ten years of undiagnosed disease was realizing that I was on my own and that I had no one to help me."


Doctor who made the diagnosis: Jozo Majdandzic M. D.

         "I admire this doctor for his thorough clinical examination and keen observation skills accompanied by a profound
         knowledge and decades of experience. The necessary extensive clinical examination requires time, which today is no
         longer available in every day medical practice (cost efficiency dictated by the health insurance system). So the Citation
         Index cannot be increased. As a result, the good 'clinicians' are becoming extinct. The only ones left over are the
          'laboratory rheumatologists' who stick to wrong information from medical text books learned by heart. These doctors
         are not able to diagnose the disease of a patient even if he is standing in front of them."


Autumn of 1995: I considered writing a book about my biography.

         "Already as a teenager I wanted to write a book about my odd family."


1996: Establishment of the lupus self-help group in Darmstadt.

         "Soon after the diagnosis, I realized that only knowing the name of my disease wasn't enough; I still needed to receive
         appropriate medical care. A bigger problem than thought: neither medical text books nor doctors even considered my
         particular symptoms. I never had fever, no exacerbations nor did I have an increased blood sedimentation rate. But I was
         obviously suffering from systemic lupus erythematosus. I soon met seven out of eleven ACR criteria: ANA, anti-dsDNA
         antibodies, Anti-Smith, leukopenia, proteinuria > 500 mg/day, butterfly rash, arthralgia and photosensitivity. I had a
         slowly progressive course which was mentioned neither in the medical text books nor by doctors. Picking a rare and exotic
         disease and in addition a course that had not yet been researched sufficiently is always bad. Besides, it seemed that gender
         medicine was unfamiliar with the problems in caring for patients suffering from autoimmune diseases. Most patients with
         autoimmune diseases are female. Their disorders are still pigeonholed as psychosomatic and dismissed without diagnosing
         them systematically. Soon I learned that many other women in Germany and all over the world were experiencing the
         same problems as I was. Meanwhile, I have learned about approximately 500 to 1000 reports of patients suffering from
         lupus erythematosus or other connective tissue diseases (based on a careful estimate)."


Lacking rheumatic care in the area of Darmstadt was one big problem. There was neither an internal rheumatologist nor an outpatient department or a department for rheumatology in a hospital. In collaboration with the "Deutsche Rheuma Liga"(German rheumatism league) whoh as been denouncing this problem for years, and the two Bechterew's disease support groups, a petition was started in 1996 aiming the establishment of an internal rheumatologist. In 1999, an internal rheumatologist established his medical practice in Darmstadt.


Summer of 1997 to autumn of 1998: Intense work on a manuscript. From autumn 1998 to spring 2000 I worked on a patient guide about lupus erythematosus.

         "I did not consider my own medical history as being important. People in support groups rather kept asking the same
         questions: "What are leukocytes?", "What are ANA?" ? I did not want to keep answering the same questions again and
         again. The problem with lupus is the confusing and complicated course of disease. Many patients are unfamiliar with their
         clinical findings or do not know which doctor they should visit at specific times. Besides, at this time German bookstores
         had only one seven-year-old booklet on lupus erythematosus in stock. It comprised 70 pages. Therefore, publishing an
         encyclopedia and a patient guide had priority. Since then I have been writing books AND answering patient's questions."

Eingeborene


2000: The patient guides titled "Mein Lupus erythematodes Tagebuch" (My lupus erythematosus journal), "Lupus erythematodes Lexikon" (Lupus erythematosus encyclopedia) and "Heft zum Eintragen eigener Befunde" (Booklet for recording my clinical findings) were published by my own publishing company "Verlag für Neue Medizin".

         "While studying, I became aware of my talent for explaining complex issues in simple terms so that everybody is able
         to understand the matter. The more complex things are, the more interesting they are to me. As a nine-year old child,
         I used to play 'publishing house' with my older brother. There was no technical term in medical psychology for
         'odyssey from one doctor to another', so, as an expression coming from my years of trials and tribulations as a patient,
         I developed the idea of 'disease odyssey'. There are diagnosis and treatment odysseys. Rheumatology concentrates on
         acute and intermittent courses of lupus which are especially serious and evident. They neglect the other forms. This
         approach and the problems caused can be explained by the fact that the nomothetic approach dominates the ideographic
         in today's scientific medicine."


2002: Publication of five additional patient guides titled "Heft zum Eintragen eigener Befunde" ("Booklet for recording my clinical results") for patients suffering from other rheumatic diseases


2003: Completely revised and expanded second edition of "Mein Lupus erythematodes Tagebuch"


After my lupus was diagnosed, several other comorbidities, internal organ problems and side effects become evident. These included bradycardia, Raynaud's phenomenon, gastroesophageal reflux disease, tachycardia, intermittent atrial fibrillation, chronic recurrent appendicitis followed by an appendectomy, hip dysplasia, endometriosis, latent Graves' disease with ophthalmopathy, suspected coeliac disease, secondary adrenal insufficiency, bronchial hyperresponsiveness (peak expiratory flow rate 50%), protein excretion = 845 mg/day and reduction of glomerular filtration rate to 64.5 mL/min/1.73 m², trigeminal neuropathy.

         "My expectations that after the diagnosis of LE all of the new disorders would then be diagnosed by the doctors timely and
         systematically were proven wrong. In fact, the doctors acted in the same way as they did before LE was diagnosed:
         Emerging disorders were trivialized and simply pushed aside. At the age of 43 I had to get really ill again in order to force
         myself to realize that I had to take the initiative in managing my disease(s). Consequently, after careful research I selected
         only the specialists with appropriate experience and qualifications. Thereafter, my new disorders were quickly and
         effectively diagnosed as they appeared. I successfully avoided the problems caused by previous general practitioners and
         internal rheumatologists who delayed diagnoses and I saved medical costs in the process!"


April 2012: Publication of "Liste schubauslösender Medikamente bei Lupus erythematodes und photosensibilisierender Stoffe" (List of drugs triggering lupus exacerbations and photosensitising substances)

         "Medical literature talked about '80 drugs' that can trigger exacerbations when suffering from lupus. Nearly every book of
         rheumatology contained different lists, some of them with different drugs. The misspellings in the various publications
         showed from which original publication the information was taken. The references quite often contained mistakes in
         terms of author's names, article titles and bibliographic information, such as year of publication, edition, journal number
         and number of pages. Besides, some references led nowhere; in other words, there is no researched proof that these
         substances can even be associated with lupus! (Mis)copying information from previous publications leads back to the fifties
         when 'pressure on scientists to publish' emerged. A list of 417 drugs and 148 other factors associated with lupus, plus
         654 photosensitising substances was developed by systematic reviewing of medical literature. This list is constantly
         updated."


June 2012: Completely revised and expanded second edition of "Mein Lupus erythematodes Tagebuch, Heft zum Eintragen eigener Befunde" (My lupus erythematosus journal, booklet for recording my clinical findings)


December 2012: Completely revised and expanded third edition of chapters of "Mein Lupus erythematodes Tagebuch" entitled "Lupus - Die Krankheit als Herausforderung und Chance, ein Beitrag zur Gender Medizin" (Lupus - The disease as a challenge and opportunity, a contribution to gender medicine). The expansions I considered particularly important:
- formulating the stages of disease odysseys;
- adding the aspect of "deathmaking", according to Wolf Wolfensberger, to the chapter "Theoretische Medizin" (Theoretical
   medicine);
- structuring the chapters about "dealing with medical diagnostic procedure and therapy" and "the relation between doctor and
   patient" into paragraphs providing as many convenient instructions for situations in treating lupus as possible;
- translating the new American classification criteria "SLICC", the new American guidelines on kidney involvement and
   discussing vaccinations when suffering from lupus erythematosus.


Trips:
- Czechoslovakia (1973)
- several trips to the German Democratic Republic (East Germany) in the seventies and eighties, including the organisation of
   an educational trip to Leipzig and Berlin in 1984
- two cycling trips along the Danube Bike Trail - Passau/Vienna/Budapest (1982/84)
- USSR (Moscow and Leningrad, 1988)
- Poland/East Prussia (1992)
- Poland/Silesia (1993)
- Lithuania (1993)
- whole Western Europe, via InterRail (1980)
- Israel (1983)


          "Unfortunately, my disease has limited me now for many years. I am not able to travel much these days. I had to increase
         the cortisone dose one time while on holiday due to general over-exertion and increased symptoms; since then I am more
         careful."


Likes ...
Music: Bach, Beethoven, Chopin, Mussorgsky, Tchaikovsky, Rimsky-Korsakov, Béla Bartók, Oskar Sala, Astor Piazzolla, Hans Werner Henze, Karlheinz Stockhausen, Sofia Asgatovna Gubaidulina, Philippe Herreweghe, Bob Dylan, Pink Floyd, The Doors, Eric Clapton, Freddie Mercury, Helge Schneider, Falco, Yann Tiersen and many other more
Art: Picasso, Max Beckmann, Otto Dix, Gerhard Richter, Neo Rauch and many other more
Movies: There are a lot!
Literature: Likewise!


I admire ...
- Angela Merkel (German Chancellor) for her intelligence, fine sense of interpersonal relationships, instinct for power and her
   diligence;
- Ranga Yogeshwar (science journalist and TV moderator) - a great guy, enough said, I would really like to meet him one day;
- Prof Reinhard Kurth who turned off his mobile phone when flying a plane, and who also broke up the monotonous German
   talk show landscape with statements like "People can travel there, but as a bird, I would not do it" (based on the question
   about travelling to Southeast Asia in 2005 when avian influenza was rampant);
- Wolfgang Leonhard, Peter Scholl-Latour, Lea Ackermann, Georg Stefan Troller and many other more.
And of course it's great that Joachim Gauck eventually became president of Germany!


Childless

         "Autoimmune diseases have occurred in both of my families of origin. So I had to realize that the risk of susceptibility
         to those diseases would probably be increased. If my child had inherited my disease, it would have broken my heart.
         Besides, I would not have been able to raise a child for medical reasons."


Single

         " '... at least they have to be able to speak in simple sentences' ;-) I live alone because there have been an 'extremely
         high number' of interesting male conversationalists in my circle of acquaintances for many years."


Future

         "Before I was diagnosed with lupus, I felt that I would perhaps only reach the age of 40. Later I was hoping to perhaps
         reach 50. Today I do no longer have the perception of my time being limited."



Dorothea Maxin


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