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 goals

Hello, my name is Dorothy Maxin. I live in Darmstadt, Germany. It's located near Frankfurt in the Rhine-Main Metropolitan Area. I was diagnosed with systemic lupus erythematosus and Sjogren's syndrome at the age of 34, after suffering for ten years. In my case, the disease has a slowly progressive course without any exacerbations, fever or an increased blood sedimentation rate. At each point in my medical history, the doctors considered me healthy. I always had to take care of diagnosing my primary disease, comorbidities and secondary diseases myself by consulting specialists.

In 1996, one year after the diagnosis, I have founded the lupus self-help group in Darmstadt. I have been writing patient guides about Lupus since 1997. Around the year 2000, due to a joint petition carried out by the Darmstadt rheumatism support groups, the first internal rheumatologist established himself in Darmstadt.

My goal is to provide the public and doctors with more information about lupus and especially about the slowly progressive course of this disease. It is important to diagnose disorders timely and systematically instead of delaying the diagnosis, which is a common problem. All courses of lupus should be treated early, intensively and in accordance with the clinical activity of the disease. This approach should replace the insufficient, delayed and less intensive immunological treatment. Therefore, new drugs have to be developed. The "genetic revolution" in rheumatologic therapy has been missing lupus so far. Chronic active, progressive courses of lupus which are often erroneously considered as "mild" have to be researched more intensely. Disease parameters characterizing chronic progressive courses of lupus have to be identified. More internal rheumatologists should particularly deal with chronic active courses of lupus. The health care system should also provide us with professional contact points for lupus patients with a chronic active course of disease, where we receive thorough medical care.

Recording: Felix Hess, Darmstadt, 17/7/13

More reports:

Darmstadt Radio: Interview with Dorothea Maxin by Petra Schlesinger on "Tag der Vereine" (Society Day) in the Darmstadtium conference centre, August 25, 2013.

hr1 (Hessian Broadcasting radio station), Women's alopecia. Interview with Dorothea Maxin by Stephan Willert, August 29, 2012.

ZDF (Second German Television), May 10, 2007, "Volle Kanne - Service täglich" (service programme), report on World Lupus Day with Dorothea Maxin (extract).

hr3 (Hessian television broadcasting), 'service: gesundheit' (service programme on health), October 23, 2003: "Cortison, das Angst-Medikament" (Cortisone - the feared drug) with Dorothea Maxin and other patients and doctors (extract).

Sat.1 (privately owned German television broadcasting station), local news from Rhineland-Palatinate/Hessia, July 5, 2002: Report about Sjögren's syndrome with Dorothea Maxin and other patients and doctors (extract).

ZDF (Second German Television), "Gesundheit!" (Health!) about thyroid diseases, January 27, 1998 with Dr Günter Gerhardt, Prof Dr Peter Pfannenstiel, Dorothea Maxin and other patients (extract).


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