Translators’ Introduction Emmanuelle Coste and Louisiane Delannoy In September 2001, the Fanconi Anemia Research Fund (FARF) approached the Monterey Institute of International Studies to see if students from the Graduate School of Translation and Interpretation would be interested in translating its manual, entitled Fanconi Anemia: A Handbook for Families and Their Physicians. We were both interested in medical translation and thought the project would also be a terminological challenge. We thought it sounded like an interesting undertaking, as it would be useful to families and medical professionals dealing with the disease. Indeed, it would be very gratifying to see our work on the Fanconi Anemia Research Fund website (http://fanconi.org) and to know that it would somehow contribute to the understanding of the disease. Throughout the translation process, we were in contact with the Canadian and French Fanconi Anemia associations (respectively Fanconi Canada and Association Française sur la Maladie de Fanconi, AFMF). They are both extremely eager to receive the French version of the manual. We all hope that medical research on this orphan disease will benefit from the manual reaching a larger audience, as more people might become involved in the trials and more specialists aware of this genetic disorder. Overall, it was a very interesting, extremely engaging and, in the end, fun project. We are both very excited to see it published and made available to the families who might need it. The manual, written by Lynn and Dave Frohnmayer, was first published in 1993. Both Lynn and Dave Frohnmayer have been actively involved with research on the disease and support to families affected by it. Dave is the President of the University of Oregon and the vice-president of the FARF. Lynn has a Masters in Social Work and is the Advisor to the Fund’s Board of Directors. She is also the editor of the FA Family Newsletter. Three of their five children were born with FA and two of them died of complications from the disease. The manual is regularly updated to reflect new research, treatment, tests and findings on the disease. This is the third edition, published in 2000. FA is a rare genetic disorder that is not well known. The manual provides much needed basic information regarding the disease for those directly affected by it, including patients, their families, friends and physicians, as well as researchers. The manual can be used as a reference source; it brings together up-to-date information from various specialists, researchers and medical centers. It is easily available since it is both in print and published online. The French translation is all the more important since AFMF has very little information available and lacks the resources to issue or maintain up-to-date publications. Similarly, the Canadian association has an English language website but no information in French. The manual is divided into two very distinct parts. In the first part, we have the chapters written by Lynn and Dave Frohnmayer. The chapters give an overview of the disease, its symptoms, treatment options and general information to help the families deal with the diagnosis of FA. The text in those chapters (and in the appendix B also written by Lynn Frohnmayer and dealing with families’ reactions to the diagnosis) was written “by lay people for lay people” (see Introduction, p. 1 of original). We therefore had to forgo some of the technical terminology. For example, we decided against “fratrie” for “sibling”. The English word “sibling” is very common but the French equivalent “fratrie” is not commonly used, and we opted to use “frère ou soeur” throughout the manual. When the English original used “red blood cell”, we had to use “globule rouge” rather than “erythrocyte” in order to respect the tone of the original text. In the chapters and in appendix B we encountered style issues and problems with social, religious and cultural references specific to the US. There were several references to faith and religion, especially as a way to face the disease and find solace. However, these references would not work in France (which, even though it might not be the only market for our translation, will probably be the main one). Indeed, an article published in Le Monde Diplomatique in September 2001 studied the difference in faith and attitude towards religion between the US and France. Only 5% of Americans claim to be without a religion, compared to 45% of French people. The attitude in France is therefore very different and, even though it is acceptable for Americans to assume that everyone believes in God or has a religious affiliation, that is not acceptable and can even be offensive to a French person. Moreover, religion is a very private matter in France that has no place in business, politics, medicine or education. It is a difference between cultures that we had to take into account, and in this instance we just went with our instincts, put ourselves in the shoes of the reader. We decided to drop most of these references (see appendix B, p. 46 of the original, “blessed innocent child” that we translated by “enfant innocent”). The overall informal tone of the manual was also a challenge as a manual of the sort would be much more formal in French. The attitude of the writers, instead of being detached and factual as it would be in French, was empathetic and concerned (see original, chapter 4, bottom of page 35 and appendix B “blessed innocent child”). The writers chose to take the hand of the readers and guide them through every step of the diagnosis, treatment and reaction to the disease, walking the readers through their emotions and giving advice on how to deal with them. It is a typically American attitude and is unusual for a French audience (“fight back”, appendix B, p. 47 seems unnecessary in French but we opted to keep it and translate it as “Il ne faut pas vous laissez aller, battez vous.”). The titles of chapter 4 “Coping with FA” and appendix B “Fanconi Anemia: Reactions of Families on the Receiving End” are probably not something one would find in an equivalent French document and it was a constant challenge to be faithful to the original and yet avoid sounding awkward. Indeed, the text in these sections did not deal with facts or give objective information about the disease but dealt with emotions and reactions from patients and their families. These matters would be left to the individuals and families in France, where people are more private about their emotions. The style in appendix B was also difficult to render in French because of expressions such as “it isn’t happening” (p. 45), which cannot be translated literally into French. A more idiomatic way to say it was necessary and we decided to say “Je rêve, ce n’est pas possible”. It was also difficult to deal with references to the healthcare system, as they are very different in the US, in France and in Canada or other countries that would benefit from our French translation (see appendix C, p. 54 in the original, regarding HMOs). In appendix B, p. 46, the text mentioned health insurance “if there is any”, which had to be “localized”, since in France everybody is entitled to health care. In another instance, we had to find the French equivalent for the National Marrow Donor Program (chapter 2, p.24 in the original), as French marrow donor or recipients would want to be able to contact them. We searched the Internet and were able to determine that they could turn to an organization called “France Greffe de Moelle”. Of course, in that case, we opted to find an answer only for our French audience and not our other possible francophone audiences. However, we were not able to find an existing overnight letter delivery services into the US for blood or tissue samples (from France or Canada or other country; see appendix T, p. 143 in the section entitled “How do you furnish a blood sample?”, and appendix U, p. 148, in the sections entitled “Skin sample collection” and “Blood sample collection”). In the second part, we have the appendices, written by researchers and medical specialists. They are straightforward scientific texts and were not difficult as far as style or tone were concerned. The main difficulty was terminology. We did tremendous terminological research for their translation (see our medical/specialized glossary of approximately 400 terms). The terminology is very specific. We had to make sure our French terminology was both accurate and widely accepted by the medical profession. We used many terminological websites and references, including: La greffe de moelle osseuse (www.ouest-transplant.org/moelle.html), Termium (www.termium.com), Glossaire de l’Association Française contre les Myopathies (www.afm-france.org), Le Conseil Génétique (www.cs-i.com/pédiatrie), Faculté de Médecine de Rennes (www.med.univ-rennes1.fr), Orphanet (www.orpha.net), Medinfos informations médicales (www.medinfos.com), EUFAR European Fanconi Anemia Research, Vulgaris Medical (www.vulgaris-medical.com), Caducée (www.caducee.net) and more. However, finding references and parallel texts in French was almost impossible for some of the very cutting-edge research in the manual. Because FA is an orphan disease, there is very little medical literature available. Finding resources was even more difficult for the more technical sections of the manual (see appendix K, p. 104 related to GHVD), or when dealing with very recent genetic research (appendices H “Mutation Analysis of Cloned FA Gene”, L “Gene Therapy: Risks and Potential” and M “Mosaicism in FA”). We had to read up on genetic heredity (appendix F “Autosomal Recessive Inheritance”), basic biology (appendix E “Cells, Chromosomes and Genes”) both in French and English (see list of websites mentioned earlier in the paragraph). However, as we advanced in the translation and our knowledge of the disease and medical concepts expanded, we were able to deal with the difficulties better and faster. For example, by the time we came upon the section on graft rejection in appendix K (p. 107 in the original), we had already read many parallel texts on graft procedures (in particular from the Ouest Transplant website) and were therefore able to recognize the terminology more quickly (“fludarabine”, “sang de cordon”…). Drug names presented a challenge as well. In appendix J, p.85 in the original, the drug Cytoxan® is found under the name Eutoxan® in Europe. We opted to indicate both names to avoid confusion. Also, in chapter 2, p.25 in the original, there is a reference to Anadrol®, which has been withdrawn from the market in France. We left the drug name and simply included an appropriate translator’s note at the end of the chapter. It seemed appropriate to draw the reader’s attention to this fact. We believe it is part of the translator’s job to identify these issues, but we cannot spend time resolving all of them, as it would take us too long, possibly leading to significant overruns in the time allotted to the translation. Appendices K “Alternate Donor Transplant for Patients with FA” and N “Gastrointestinal Tract and FA” both deal with very specific medical procedures and use extremely technical medical terms. We had to turn to the original authors to help us understand the text and find the appropriate terminology in French. It was difficult for us to find competent people with knowledge of both French and English because FA is a rare disorder. We also relied on a number of other sources for terminological issues. We were in close contact with Nicole Westrich, Family Support and Administrative Assistant at the FARF, for clarifications of terminology. She was very precise and prompt in her responses. In addition, as a parallel project, we translated a part of the website of Fanconi Canada. The association had the translation reviewed by a bilingual FA specialist who, it turned out, made no terminological changes to our translation. This came as a confirmation that we were using the appropriate medical and specialized terminology and finding the right resources. Finally, AFMF provided us with a French translation of a shorter and previous version of the manual. That translation was done by a volunteer, with no training in translation but who knew the disease and terminology very well. Although we received the translation very late in our project and the translation took many liberties with the original, we knew that the terminology used was correct and therefore, it helped us once again confirm that our terminological choices were right. Finally, we chose to leave the names of the hospitals, medical and research centers as well as laboratories in English when they appeared in the titles of the appendices. For instance, we thought that if somebody wanted to contact Blanche Alter, they would have to know that they can find her at the University of Texas Medical Branch (see appendices Q and R). If we translated these names into French, families or physicians might not be able to locate the specialists. In the body of the text, we originally chose to put the names of these institutions in English and add the French translation in parentheses but this method proved heavy at times, in which case, we just used the French name (see appendix J, p. 89: we left the name in French because the acronym was in the title and helped the reader know what was being referred to), or the English name: some terms are easy to understand, even for those who are not familiar with English (“University of Oregon” would be easily understandable to a French-speaking reader). We encountered a few other problems along the way, particularly as we were putting together the final draft of the translation. We had to reorganize appendices as we were instructed to skip appendices W and X (both irrelevant for non-US or non- English-speaking readers). Formatting was difficult, in particular because it was a very long project executed in many different files. That difficulty was increased by the fact that this was a team effort and we wanted the final project to be flawless for online publication and possible paper publication. We had to create a style sheet so that all chapters and appendices would be coherent. We both wish to sincerely thank Professor Chukwu without whose support, kindness, patience and expertise we would not have been able to complete this project; Nicole Westrich for her prompt responses and her enthusiasm and Christian Degueldre for taking on this huge editing nightmare. Louisiane wishes to thank her American parents, Mr. and Mrs. Heffernan for looking up information in their biology book, assisting her with online research and brainstorming on the subject of polar bodies. Emmanuelle wishes to thank her parents for their suggestions concerning style and Jeff for his support. ANEMIE DE FANCONI Manuel pour les familles et leur médecins Troisième édition, publiée en mars 2000 Lynn et Dave Frohnmayer Traduit de l’anglais par Emmanuelle Coste et Louisiane Delannoy [logo] Fanconi Anemia Research Fund, Inc. ANEMIE DE FANCONI : Manuel pour les familles et leur médecin par Lynn et Dave Frohnamyer Edition, design, mise en page et conception de la couverture : Joyce Owen Traduction : Emmanuelle Coste et Louisiane Delannoy Copyright© 2000 Première édition : Avril 1993 Deuxième édition : Mars 1995 Troisième édition : Mars 2000 Les textes de ce livre peuvent être reproduits avec la permission des auteurs ou de l’éditeur. Des exemplaires supplémentaires peuvent être obtenus de l’éditeur en écrivant à : Fanconi Anemia Research Fund, Inc. 1801 Willamette Street, Suite 200 Eugene, Oregon 97401 Téléphone: 001-541-687-4658 Fax: 001-541-687-0548 Courriel: [email protected] Site Internet : http://fanconi.org Nous tenons à remercier tout particulièrement Joyce Owen pour avoir consacré des heures et des heures à la correction, le design et la correction des épreuves des trois éditions de ce Manuel. Merci à Mary Ellen Eiler pour nous avoir fait bénéficier de son expertise en révisant ce manuel.