Expertise: Translation of English technical/professional language in technology, medicine, and other areas into English at the reading level of a consumer or patient. Also rewriting poorly translated instruction manuals for consumer products.



My website represents an example of my work. I am a Madelung's Disease patient from California. I have a website at the following URL and endeavor to maintain the most current and accurate information available on my site. I would like to encourage anyone dealing with this condition to have a look at the following URL: http://www.geocities.com/madelungs/madelungshome.htmlThere are not enough Madelung's patients to comprise an "agency". Two deceased Madelung's patients left considerable legacies in terms of research and information on this condition. Sister Mary Ellen Boyle, a Catholic Nun and Nurse from Connecticut USA left a considerable legacy in the form of a phamplet useful in diagnosis that will remain the definitive diagnostic introduction to this condition for many years. Sister Boyle died June 7, 2003 of apparent complications. Sue Rugge, a California based author died June 12, 1999, evidently also of complications. Her legacy is a comprehensive list of the articles about this disorder that existed at the time she had to stop working. I am picking up their trail, hoping to make patients and their health care practitioners aware of recent breakthroughs in connecting Madelung's disease with mitochondrial mutations and associated MERRF and ragged red muscle fibers confirmed in some (though possibly not all) cases of Madelungs disease. I am also trying to further an understanding that calling this condition "benign" is clearly a mistake, since it infiltrates health tissue, metastasizes, and regenerates. It is not cancer in the traditional sense, nor is it bacterial or viral. It seems to be one of the best opportunities for research into mitochondrial mutations as patients with Madelungs tend to survive for a very long time, while continuing to slowly get increasingly ill and debilitated overall. I consider myself a pioneer in a new era of patients, taking an active role in managing and treating my condition. I would welcome correspondence from patients, families, and medical professionals who are dealing with this condition. I can also direct anyone dealing with Dercum's Disease or Multiple Familial Lipomatosis (not to be confused with Multiple Symmetrical Lipomatosis) to appropriate resources for those conditions.