A Guide To Family Health History - Genetic Alliance
1D o e s i t R u n i n t h e F a m i ly ?A Guide toFamily Health Historyg e netic a l lia nce
ContentsThis toolkit will help you collect, organize, and understand yourfamily health history. In “Book 1: A Guide to Family Health History”,each section includes choices of activities. Choose the activity thatworks best for you.Introduction1CollectInformation to collectHow to collectHow to ask questionsSample questions681214OrganizeHow to organizeFamily health portrait1618UnderstandWhat now?ResourcesRead “Book 2: A Guide toUnderstanding Geneticsand Health” to learn more about:1. Why is genetics importantto my family and me?2. Which diseases might runin my family?2021
?What is familyhealth history?Family health history is information about diseases thatrun in your family, as well as the eating habits, activities,and environments that your family shares. Knowing aboutthe diseases that run in your family can help you makehealthy choices.Your family’s health is one part of the history of yourfamily. While collecting your family health history, payattention to events, stories, and experiences as well.Gathering your family history helps you share your familystories and health information with your family membersand children.“ Family health history can befound in the choices youmake, the stories your familyshares, and the culture of yourcommunity. Discover it andimprove your health!”– Sharon F. TerryPresident & CEOGenetic Alliancea guide to family health history 1
How can family healthhistory affect my health?You inherit many things from your parents and grandparents.They pass on culture and values through photos, recipes,stories, spiritual practices, and music. You also inherit howyou look—for example, how tall you are and the color of yourSmall structures in cells called genescarry information for these characteristics and how youreyes.body works. Your genes were passed on to you from yourparents.*Carlos’ storyEvery man in my family has dropped dead before the ageof 50—my father, my grandfather, and my uncles. I alwaysassumed that I wouldn’t make it to 50.A few years ago my cousin told me that he told his doctorabout our family health history. His doctor did some tests andfound out that my cousin was at risk for heart disease—maybeeven a heart attack.2 does it run in the family?
Some genes can make it more likely that you will getcertain diseases. When members of your family share healthproblems, you might be at risk for getting the same healthproblems in the future. This is because family members canhave genes, lifestyle, and environment in common. However,prevent illness by knowingyour family health history and by making healthyyou may be able tochoices.He put my cousin on medication tolower his cholesterol and told him tostop eating so many fried foods.I talked to my doctor and got the sametests and advice. Last year, I threw thebiggest 50 th birthday party ever!a guide to family health history 3
How can my choicesaffect my health?Many things shape your health. Some things—such as yourgenes—are outside of your control. Other things—such aswhat you eat, if you smoke or exercise, and what you do fora living—canbe influenced by the choices youmake. To make healthy choices, you need to understandyour current health, your risk for getting certain diseases, andyour environment.photo by rick guidotti*Kathleen’s storyI’ve always known that some of the relatives on myfather’s side of the family died in early adulthood. At23, I started to experience heart problems. I worried thatI would die young like my aunt Kathleen, after whom Iwas named. Like many of my relatives who died, I wasunusually tall, and everyone said I was Aunt Kathleen’s“spitting image.”Di d yo u know t his amaz ing fact aboutI was in medical school at the time and drew a familytree. When I shared my family health history with a few64 does it run in the family?
F amily health history isthe first step on the roadto better health.specialists, they did some tests and diagnosed me with Marfan syndrome. Icontacted all of the members of the family who I feared were affected, andthey were able to get lifesaving treatment.Now I don’t live in fear that I might die suddenly like my aunt. I don’t worryfor my daughter Marissa, who also has Marfan syndrome. We take theproper medication, get checkups regularly, and can get on with our lives.Our ancestors did not die in vain. Their story was heard and saved many.colle c t i n g in fo mat ion ? Now you do!To find out more about Marfan syndrome, visit www.marfan.org.a guide to family health history 5
What informationshould I collect?Who to collect information on: Yourself Your parents Your brothers and sisters Your childrenThen move on to aunts, unclescousins and grandparents.Basic information to collect: Name and how you are related (myself, parent, child, etc.) Ethnicity, race, and/or origins of family D ate of birth (or your best guess—for example “1940s”) Place of birth If deceased, age and cause of deathCollect stories about your ancestryand culture. This is a great chance topreserve your family’s memories.You don’t have to collect everything!6does it run in the family?
Who to collect info fromCollect the medical andhealth information on:YourselfYour brothers and sistersYour childrenYourhistory:parentsHealthIf deceased, age and cause ofdeathBe sure to record age at onset ofsymptoms (when the disease started) History of surgeries Immunizations Alzheimer’sdiseaseThen go backa generation at Mental health disorders (such as Asthmaa timeandandallergiesinclude:depression, schizophrenia)Grandparents B irthdefects (such as cleft lip,AuntsandUncles Obesityheart defects, spina bifida)Cousins P regnancy (such as number Blindness/vision lossNieces and nephewsof children, miscarriages, Cancer (such as breast,complications)ovarian, colon, prostate) StrokeBasicandinfocollectpasttomedications Current Substance abuse (such asName and relationship Deafness/hearingloss at to youalcohol, drugs)(myself,a youngageparent, child, etc.) evelopmentaldelay/ DRace, ethnicityand/or origins Lifestyle:learningdisordersof family Exercise Diabetes/sugar disease Habits (such as smoking,Date of birth (or if the Heart diseasedrinking, regular doctor/information is unavailable, Highblooddentist checkup)writeyourpressurebest guess—forexample“1940’s”) Highcholesterol Hobbies and activitiesPlace of birth Nutrition and diet OccupationIt is important to learn what you can.a guide to family health history 77
How do I collectfamily health history?Talk to your familyYour relatives are the best source of information about yourfamily. Family history is often shared while talking at familyevents like birthday parties, weddings, reunions, religiousgatherings, holiday dinners, and funerals. These eventsprovide a chance to ask family members about their lives.8 does it run in the family?
collect organize understandUse what you haveCheck first to see if your family has family trees, charts, or listingsof family members. This information may be written in babybooks, photo albums, birthday date books, a family bible or otherreligious records. Review your own medical history with yourdoctor to make sure you are not forgetting anything.Plan an individual conversationAfter you have brought up the idea of collecting your familyhealth history, you may want to talk with certain familymembers to get a more complete record of what they know.If possible, record these talks so you can go over them later.This guide includes questions to ask.Send a surveyYou may wish to send out a survey asking for healthinformation from relatives. One quick and easy way to collectthis information is to put it in a holiday newsletter. Noteveryone will feel comfortable filling out a survey. Be sure toexplain exactly why you are asking questions.a guide to family health history 9
Tips for collectingfamily health history Start with your parents if they are still living. Often,older relatives are good sources of information and canbe the “family historian.” If you are adopted, you may be able to learn some ofyour family history through your adoptive parents. Youmay also ask to see the adoption agency records. It is important to respect others. Some relativesmay not want to share their medical histories. Somemay not know their family history.Lisa’s storyWhen I became pregnant, I talked with my parents about diseases that run inour family. I wanted to be prepared for anything that could affect my child. Myparents told me that, before I was born, my aunt had a baby boy who seemedhealthy. A few weeks later, however, he became very ill with vomiting and wasn’teating. The doctor diagnosed him with a genetic disorder called MCADD (MediumChain Acyl-CoA Dehydrogenase Deficiency) and put him on a special diet andmedication. Unfortunately, some damage had already been done.When I told my doctor this, she checked to see if MCADD was included inour state’s newborn screening program. Luckily, it was. When my daughter was10 does it run in the family?
collect organize understand It can be scary to find out about a health concern inyour family. Sharing family history with yourhealthcare provider can help you understand ifyou are at risk. F amily members may not clearly identify all diseases. Forexample, someone who suffered from “the blues” mayhave had depression. Ask family members to talk abouthow relatives acted.born, we paid close attention to her newbornscreening results. She too has MCADD, butwe were able to start treatment right away.Now she is a healthly, active three-year-old. Bylearning about my family health history, I wasable to ensure that my baby stayed as healthyas possible from the moment she was born.To find out more about MCADD, visit www.fodsupport.org.a guide to family health history 11
How do I ask myfamily members aboutfamily history?On the next page is a list of questions that will help you talkwith your family members. These questions will help you learnabout your family stories, as well as health patterns and anyimpact environment, lifestyle, and family history may have onfamily health. Add your own questions that relate toyour family.Prepare ahead of time Write down what you know—such as family members’ names,where they were born, or how many children they have. Pick the questions you will ask ahead of time. Record the interviews on a tape recorder orvideo camera.*Michael’s storySince I am adopted, I thought there was no way for me to puttogether a family health history. Even though my adopted familyand the adoption agency tried to help, they didn’t have theanswers I needed about my birth family’s health. How can I havea family health history without having my questions answered?12 does it run in the family?
collect organize understandDuring the conversation W rite down health-related information given by yourrelative. Try to keep the questions short. Avoid questions that canbe answered with a simple “yes” or “no.” Use follow-up questions such as “why,” “how,” and“can you give me an example.” D o not expect people to know the answers to all ofyour questions. R espect a person’s wishes not to talk about certaintopics. Ask your family member to show you pictures, recipes,letters, and other family keepsakes. These can helppeople remember details and lead to more familystories. Try not to interrupt—let your familymember tell his or her story!There is something I can do. I am startingmy family health history with me and myhealth issues—like the fact that I startedwearing glasses when I was 12 years old.I will pass the information on to mychildren, and they will be able to add toour family history.a guide to family health history 13
Sample questionsThese questions are examples. You should change them to fityour conversation.Questions about childhood Where were you born? Where did you grow up? D id you experience any health problems (for example,allergies) as a child? D o you have any brothers or sisters? Are they living? How oldare they?Questions about adulthood What jobs have you had? Can you tell me about a normal day? What was your work environment like? D o you have children? What are their names? When were theyborn? Did they have any health problems? W hat habits (sun exposure, physical activity, smoking, etc.)have you had that could have affected your health? D id you have any health problems as an adult? At what age?How was this treated (e.g. medicine, surgery)?1614 doesdoes itit runrun inin thethe family?family?
collect organize understandQuestions about parents and grandparents W hen and where were your parents born? What do you knowabout them (for example, their jobs and hobbies)? W hen and where were your grandparents born? What do youremember about them? Did your parents or grandparents have any health problems? D o you know if your parents or grandparents took medicine ona regular basis? If so, for what? Did they use home remedies?What kinds and for what?Questions about family life Has your family lived anywhere that caused them healthproblems (e.g. disaster areas, waste sites)? W hat foods does your family usually eat? Describe a typicalfamily breakfast or dinner. Do you eat special foods forspecial occasions? Has anyone had problems in pregnancy or childbirth? Whatkinds of problems? Are there any diseases that you think might run in ourfamily? Is there anything else you would like to tell me about yourlife or health concerns in our family?a guide to family health history 1517
How can I organize myfamily health history?The family health history information you collect can be writtendown or typed into the computer. It is important to write downall of the information so it makes sense to you, your family, andyour healthcare provider. We have included some ideas belowto help you organize your information.Family health portraitA family health portrait is like a family tree showing familymembers and their health. Because it is a simple picture ofyour family health history, it can be easily shared with yourhealthcare provider. Turn to page 18 for more information.*Isabel’s storyMy grandmother died of a massive heart attack when she was 39 years old.Even though my mother was so careful about healthcare for our family, shedid not know that she had a very serious heart condition. She felt justfine, but during a routine checkup two years ago, a doctor discovered mymother’s uncontrollable heart arrhythmia. Mom was taken to the hospitalimmediately, and a cardiac pacemaker was implanted the following day.Since the doctors knew my grandmother had died of a heart attack at ayoung age, they took my mother’s symptoms very seriously.Di dThisyou knaboutowmytmother’shis amazing factaboutknowledgeand grandmother’shealth scaresme, but I feel it is good to know. I know you can feel healthy but have61816 doesdoes itit runrun inin thethe family?family?
collect organize understandHealthcare Provider CardOnline (www.geneticalliance.org/ccfhh),you will find a card to fill out and bringto your provider. The card focuses onconcerns you have about your familyhealth history. It also gives yourprovider more information on how tobest use your family health historyto figure out your risk for getting adisease.a serious health condition. Whenever I gofor my checkups, I always talk to my doctorabout my grandmother’s and mother’s heartconditions. She checks my heart thoroughlyand always runs a special test on it becauseof my family health history.Though I can’t change what happened tomy mom and grandmother, I can use theinformation to manage my health better andlower my risk of heart disease.colle c t i n g in fo mat ion ? Now you do!7a guidea guideto familyto familyhealthhealthhistoryhistory 1719
How can I draw afamily health portrait?If you have access to the Internet, you can use the U.S.Surgeon General’s My Family Health Portrait to create a familyhealth history tree on your computer.Visit www.familyhistory.hhs.gov.You can also draw your own family health portrait. Use theexample on the next page to help guide you.Instructions for drawing a family health portrait W rite your name and the date at the top of a largepiece of paper. D raw yourself at the center using a square if you are a manor a circle if you are a woman. D raw your parents above you and label each symbol withhis or her name and birth date (or approximate age). D raw a line between them and then draw a line downto you. W hen possible, draw your brothers and sisters and yourparents’ brothers and sisters from oldest to youngest, goingfrom left to right across the paper. Add the health information you collected for each individual. Add the ancestry and any other information you havecollected.Family Health Portrait Legend18runin thefamily?18 doesdoesititrunin thefamily?malefemaledeceased
collect organize understandKim’s story123To start my family health portrait, Iadded myself. Any women on theportrait are drawn with a circle.Under my name, I wrote my birth date.Next, I drew in my mother and father.Any men in the portrait are drawn assquares. I connected my parents toeach other using one line and drewanother line that connected to me.Next, I added my brother and sisterand their birthdates. I connected eachof them to the line that connects myparents.me (Kim)b. 1975me (Kim)b. 1975Helenb. 1952Markb. 1950Jonb. 19744Helenb. 1952Markb. 1950me (Kim)b. 1975Rebeccab. 1979mexicoFor my father’s parents, I puttheir names above his and drewone line connecting them to eachother and another line connectedto my father. I also added myfamily’s ancestry. Finally, I drewa line diagonally through mygrandmother’s circle to show thatshe died at age 42.Luisb. 1929Anab. 1930heart attack,age 42germanyMarkb. 1950Jonb. 1974Helenb. 1952me (Kim)b. 1975high bloodpressureRebeccab. 1979guideto familyhealthhistory 1921a guidea tofamilyhealthhistory
?What now? Save your family health history and update it with newinformation you learn about your family. Find out more about the diseases that run in your familyand how to stay healthy. Share information with your family. Take your family health history to yourhealthcare provider. Read the next booklet, “Does It Run In the Family? A Guidefor Understanding Genetics and Health.”20 does it run in the family?
collect organize understandResourcesGenetic Alliance Family Health History ryThe Smithsonian Folklife and Oral History Interviewing Guidewww.familyoralhistory.us/news/view/the smithsonian folklife andoral history interviewing guide/and visit the American Folklife Center website:www.loc.gov/folklife/fieldworka guide to family health history 21
www.geneticalliance.org4301 Connecticut Ave. NW, Suite 404Washington, D.C. 20008-2369Phone: 202-966-5557 Fax: 202-966-8553info@geneticalliance.orgGenetic Alliance transforms health throughgenetics. We promote an environmentof openness centered on the health ofindividuals, families, and communities. Webring together diverse stakeholders thatcreate novel partnerships in advocacy;integrate individual, family, and communityperspectives to improve health systems;and revolutionize access to information toenable translation of research into servicesand individualized decision making.Funded in part by a grant (U33 MC06836) from the Maternal and Child Health Bureau,Health Resources and Services Administration.
and children. “Family health history can be . found in the choices you make, the stories your family . tree. When i shared my family health history with a few . Kathleen’s story. . charts, or listings of family members. this information may be written in baby books, photo
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Story – Talk of the Block Family SV, “Kim and the Kids,” pg 9-10 Volunteer’s family pictures (if possible) Family worksheet (see below) Activity Ideas: Family tree: T introduces family by talking about own family and drawing a very simplified family tree on the board using the family vocabulary words (see above). Feel free to bring
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Collectively make tawbah to Allāh S so that you may acquire falāḥ [of this world and the Hereafter]. (24:31) The one who repents also becomes the beloved of Allāh S, Âَْ Èِﺑاﻮَّﺘﻟاَّﺐُّ ßُِ çﻪَّٰﻠﻟانَّاِ Verily, Allāh S loves those who are most repenting. (2:22
WHAT IS A FAMILY OFFICE? TYPES OF FAMILY OFFICES A single family office (SFO) is a family office serving (multiple) generations of one single wealthy family. The SFO is designed to fit the specific needs and beliefs of the family. A public multi-family office (MFO) is a family office looking after interests of multiple families with less wealth.
