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1Sean MartinMarch 9, 2000Dr. BrutlagYou are a young female in your late twenties who has just graduated from ahighly esteemed law school. You have recently been married to your high schoolsweetheart, and the two of you have decided to move into the city to start your livestogether. Professionally, both of your careers are taking off, and the talk of starting afamily begins to pop up regularly during evening meals.Up until this point, you have chosen to keep one important secret from yourspouse. While he is fully aware that your father passed away some three years ago froma degenerative disorder, he has no knowledge or background of the disease. You decideto inform your husband about Huntington Disease (HD), an autosomal dominant geneticdisorder which is characterized by loss of motor and cognitive functions and tends tohave a late onset. You explain that there is technically a fifty-fifty chance that you mayhave the disease; however, for one reason or another, you believe the chance of passingthe gene to your children decreases because you are a female.Your husband is taken aback by this sudden news, and you immediately formulatea plan to regain his trust. Due to the recent growth in biotechnology, a diagnostic test forHD has been discovered. While you had decided not to have the test a few years before,you now find yourself willing if it will strengthen your relationship with your spouse.The two of you discuss the possible positive outcomes, with the strong desire for childrenbeing a recurring theme. However, testing positive for HD would clearly change yourlife in more ways than could be imagined. Do you take the test?If you said yes, go to page 2If you said no, go to page 32You go to a nearby medical center and have the genetic screen performed. A fewweeks later, you return to the lab for your results. You find that you have been positivelydiagnosed with Huntington Disease. While your greatest fears have become reality, youalso feel a sense of relief. No longer will you sit up late at night wondering if the diseasewill eventually consume you. Now, despite the negative consequences attached, at leastyou know.Initially, there is a sense of shock pervading the household. However, as usual,your life slowly goes back to normal, and you resume your everyday activity as if nothinghas ever happened. As he claimed he would, your husband has supported you through itall. You feel ashamed and guilty that you ever involved him in such a tragedy, and yousincerely wish there were some way to make it up.A few years pass. Both you and your spouse have become successful in yourprofessions, and your relationship is as strong as ever. Several recent victories in thecourtroom have you feeling invincible. One night at dinner, out of the blue, yourhusband raises the issue of having children. You remind him of the risks involved withHD and the possibility of conceiving children fated to die of this horrible disease. Heexplains that he has been doing some research on your family and that no female has everpassed on the disease to her child. He also describes how important it is for him to havesomeone with him when you pass on. Knowing how much he has supported you throughit all gives you a strong desire to concede. Plus, you feel that having children before youdie would somehow make your life complete. Despite the possible ramifications, do youhave a child?If yes, proceed to page 4If no, proceed to page 53You have come to the conclusion that taking the test is not worth the possiblenegative consequences. Your husband supports you in this decision, and together yourealize that it is best to hold off on having children. After all, you can always adopt if thedesire becomes great enough. The two of you go about your lives as if the topic of HDhad never been raised.A few years after the decision not to test, you wake up one morning with arealization. As you are brushing your teeth in the mirror, you realize that you have a fiftypercent chance of acquiring Huntington Disease sometime within the next fifteen years.How could you possibly have been so shortsighted? Fifteen years is not a long time, andthe disease may very well onset in as few as five. But, wait! There are still so manythings that you want to do while you still can.Suddenly your thoughts shift to your husband. He has been so wonderful aboutsupporting you through the hard times, and you could never ask him to give up his lifebecause of a simple whim. He has had severe worrying bouts at times, but he tries hisbest to stay positive for your sake. Taking off suddenly to explore the world may throwhim over the edge. However, you feel a sense of urgency. The time is now or never. Doyou live for moment in hopes that your husband will understand, or do you continue onwith the life that has brought you so much happiness up until now?If you chose to live for the moment, go to page 6If you chose to continue on as before, go to page 74You and your husband conceive with relative ease, and nine months later you arein the hospital giving birth. You both decide against any pre-natal testing in fear that itwill affect your decision to go through with the birth. Much to your surprise, you havetwo healthy male boys. Oddly enough, this immediately raises a concern.If the twins are monozygotic, then both will either have the HD gene, or neitherwill. However, if they are dizygotic twins, then both may have it, one may have it, orneither may have it. The doctor informs you that he could test to see which type of twinsyou have, but you again decide against it for fear it may impact the way you raise yourchildren. You and your husband proudly take your two boys home.The addition of children to your household gives newfound life to both you andyour husband. For several years their presence alone is enough to quell any worries youhave about the onset of HD. However, at the age of five, you begin to noticeuncharacteristic twitching in one of your sons. Despite keeping a close eye on thesesymptoms, the disease comes quickly. You learn that your son has inherited juvenileHD, a somewhat rare form that progresses rapidly. Shortly thereafter, you too developyour first symptoms. Slowly but surely you begin to lose control. Your final coherentthoughts involve your sons: one who is now on the verge of death only twelve years afterentering this world, the other who must live out his remaining days in constant fear ofwhat is to


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