Carol Daus is a freelance writer who specializes in health and lifestyle issues. For the past twenty years, she has had articles published in a variety of consumer and trade magazines, including Health, Parenting, and Coping. Prior to becoming a full-time writer, she worked in Chicago and San Francisco as a writer for several national health organizations and large urban hospitals, including the American Heart Association, San Francisco Children's Hospital, and Medical Data International.
On a personal note, Ms. Daus became interested in the importance of family medical histories when her own extended family began to display unusually high patterns for heart disease and cancer. Daus, a concerned wife and mother, treasures the well-being of her family, and works diligently toward generating and maintaining a healthy household. She lives in Huntington Beach, CA, with her husband, Tony, and their three children.
Jeanne Homer is a genetic counselor for Genzyme Corporation in Cambridge, and is currently working with people who are considering undergoing genetic testing.
(Foreword) If unearthing your family medical history only made you aware of your ultimate fate, it would have limited value. The reality is that discovering your medical history can make a difference in your future. Many disorders have a genetic component, over which you have no control, as well as an "environmental" element, in which you do have a say. In other words, lifestyle can shift the scales and determine whether or not a genetic propensity toward a disease will become a reality. And in illnesses where heredity plays a larger role, awareness and early detection can have an enormous impact on the outcome.
At the very least, if you research your family medical history, you will become aware of some potential problems and can prepare yourself to deal with them. As a prenatal genetic counselor, I see many couples with a family history of multiple miscarriages. If you have a similar history, you may have a 1 in 20 chance of having a child with birth defects and mental retardation. A blood test can tell you if you are at an increased risk, and if you are, then you may want to have genetic testing during your pregnancy or choose other options for having children.
Past Imperfect is a step-by-step guide to the ins and outs of tracing your family medical history. Carol Daus's expert advice ranges from hints on how to broach this potentially sensitive subject with your relatives to what information can be gleaned from cemeteries! Past Imperfect has the unusual distinction of being not only an excellent reference manual on both genetics and genealogy, but it is also a book that is interesting and enjoyable to sit down and read from start to finish. Her examples of real-life families poignantly illustrate the value of undertaking this pursuit. She then does much of the legwork for you, by providing myriad phone numbers, addresses, and even websites in the appendices. There is also a superb compendium of common genetic disorders, including a wealth of information on inheritance, treatment, and prevention.
Following are examples of how Past Imperfect can play a significant role in not only your health, but the health of your entire family:
* If realizing that adult-onset diabetes runs in your family gives you the incentive to improve your diet and adopt an exercise program, then these actions may delay the onset of the disease or prevent it altogether!
* Twenty-five to fifty percent of patients with bipolar disorder (manic depression) attempt suicide once, and 19% of manic-depressive patients die due to suicide. The peak age of onset of this illness is in the 15-19 age range. So, if you discover that your relatives suffer from this disorder, keep a close eye on your teenagers and don't delay in getting treatment at the first signs.
* Response to medications can also be an inherited tendency. For instance, if depression runs in your family and it took five attempts to get the correct prescription that finally helped your mother, find out which medications had unpleasant side effects and which one did the trick.
* Alternatively, you may be reassured that you have escaped the malady present in your ancestors based on the inheritance pattern of the disease. A patient of mine whose uncle had suffered from hemophilia was relieved to know that his own children were no more at risk than mine to be born with this potentially serious ailment.
Every week we are discovering the locations of a growing number of genes, new tests are being developed, and we are solving the mysteries of inherited diseases. Genetic information can be very complex, and the issues surrounding inherited disorders can often be clouded by questions of guilt, blame and simply incorrect information. Nearly every day, I listen to how my patients have dealt with the imperfect past of their families: One mother informed me that her daughter's thalassemia was from "the other side of the family." (Thalassemia, in fact, is always inherited from both the mother and the father.) Again and again I hear that a niece or nephew was born with a cleft lip or a heart defect because "his father used drugs in the '70s" (not a possible cause of these conditions).
Another of my patients told me recently that he was not concerned about a strong family history of manic depression because, "it only affects the women in my family." (Actually, that was by chance, since manic depression affects males and females equally.) And then there was the expectant father who was mildly affected with type 1 neurofibromatosis who was not aware that, even within the same family, this disease, for unknown reasons, can strike some members very severely, even causing cancer, while others escape with only freckles in the armpit region. Each of his children faces 50-50 odds of inheriting the faulty gene from him.
For these reasons, if you have any questions or concerns, as Past Imperfect states so clearly, it's important to meet with your doctor or a genetics professional. He or she will analyze your family tree and then provide an individualized risk assessment for you and your children. Genetic testing may be offered, or referrals or recommendations will be tailored to your specific needs.
And now, Carol Daus will be your guide as you embark on an adventure that will, at the least, be fun and enlightening, and may even save your life!
Jeanne Homer, M.S., Genetic Counselor
