September 18, 2009

A Simple 5-Step Plan for Family Histories

In the past week and a half my family has had some medical nightmares pop up (not unusual for us).  My mom fell and broke her arm, my dad's MRI of his back showed something on his kidney which they believe to be cancer, and then I spent 12 hours with my mom in the ER and being admitted to the hospital for yet another round of cellulitis in her legs. These things made me realize I've yet to write about the issue of family history.

What and Why?
Most people are familiar with this whole concept, but bear with me while I brief anyone who might be confused by what I mean.  Especially in the world of chronic illnesses, genetics seem to play a role in the likelihood of an individual turning up with one or more certain illnesses.  Sometimes these connections are not well understood - for example, some people link the chances of getting pregnant with twins to a family history of twins, but no one understands why or how this link may work.  Others are more direct and are passed on in the same ways as hair color, height, and body shape  Regardless, knowing, analyzing, and interpreting your family history can be immensely helpful in early detection of disease and illness.  It will take a bit of time and may raise some concerns or questions, but you have to remember to look at it with hope: by taking the time now to find the concerns and questions, you give yourself (and others) the chance to plan for them BEFORE running into a crisis!  A lot of conditions will be avoidable altogether as long as you know they're out there, and others can be caught much earlier than otherwise likely.  For example, if we knew to look for Sjogren's when I was younger, we could have taken steps to protect my salivary glands and prevent the extensive tooth decay I deal with now.  Since I have this information, at least I will be able to keep a better eye out for things like this with my children someday!  The American dream - to make a brighter future for our children with all the information we can get now :).

(Sorry, I'm a business person and I think it shows in how I approach this issue.  However, if you follow my framework I can promise you will be organized!)

Step 1: Research your family history
The point of this step is develop a list of conditions that appear in your bloodline.  There are a few ways to organize this information.  I think a good way is to list each condition that occured, who had it, and as many details as you can get (age at diagnosis, symptoms, progression of the illness).  You are likely to find that a number of people in the family had the same or similar conditions, so keep track of each person it appeared in.  In particular, doctors want to know if a blood sibling, parent, or grandparent had a condition, but if you see a trend like all your aunts and uncles had something, make note of that too.  Obviously, people related only by marriage are important people but not relevent for this project.  Remember to examine all parts of your family, both mother and father's sides (obviously, we're referring to biological parents) and each of their siblings and parents.  I think a good way to make sure you didn't miss someone is to sketch out a family tree and list information by each person's name.  This will also help you remember who's a blood relative and who was related only by marriage.  Maybe you'll need to speak to every family member, but it is worth it.  On the other hand, many families have a person who seems to know everything about everyone.  My mother is one of those people.  She can tell me who had what condition, when they were diagnosed, when and how they died (if relevant), what their symptoms were...I think she even knows what color socks they wore.  If you have a person like this in your family, congrats, this step will be a snap.  Well ok, it'll be easier.  But don't forget the other side of your family!

Step 2: Organize the information
Once you have your family's history in front of you, it can seem confusing and overwhelming.  If you don't organize it properly, you won't remember the important items when you need to (such as filling out a form for a doctor).  Assuming you worked from a family tree or list of family members and now have information listed next to each person, I recommend reorganizing the information by condition.  Read through the list of conditions or illnesses in your family, and make a new list of each one the first time it appears.  Then, go back through the raw data and record the details, especially how the person was related to you.  For example:
  • Asthma - Dad, dad's brother Joe, grandfather (dad)
  • Diabetes (type 2) - mom's sister Mary, grandfather (mom), and grandfather (dad)
  • Breast cancer - mom's sister Ally (45), grandmother (dad) (58)
Notice that I identified each person by which side they were related on (instead of Uncle Joe, I said dad's brother Joe, or listed (dad) or (mom) after grandparent to indicate which side of the family they were on).  Doctors usually want to know information in this format (without names, of course).  I also demonstrated listing age of diagnosis, which is useful in some conditions.  Additionally, if possible, this is a good chance to organize conditions into groups of related illnesses.  For example, put diabetes and hypothyroidism next to each other, or list all cancers next to each other.  This is usually how conditions are listed on a questionaire for a doctor, and will help you remember the information AND identify patterns (see Step 3). 

Step 3:  Interpret the information
Once you have the data organized, you may be able to get even a little more information from it.  As I said some conditions have a clear link...if you see someone in your family had colon cancer, you know you should get screenings early and often, or if a lot of people had heart disease you should be careful to keep your blood pressure in healthy limits.  On the other hand, the presence of some conditions may not directly mean you are at a higher risk for them, but can show a "genetic predisposition".  For example, many conditions in the autoimmune world are related. No one else in my family had Sjogren's (that we know of), but they did have other autoimmune conditions that should have indicated there was a good chance I'd have at least one.

Step 4: Effectively use and share your information
Now that you did all this work, at the very least you should take a copy of the information with you when you go to a new doctor to help you fill out paperwork.  If your family history is extensive or you have a complex health situation, you may want to give a copy of your information to your doctor to keep in your records.  If you have "mystery symptoms" you haven't been able to piece together, take your family history to your doctor and discuss it together to see if it reveals a new direction you should explore for answers.  Or, even if you are unincumbered by medical problems now, take the chance on a routine check-up to review your family history and make sure you are taking any steps to keep yourself in good health (again, if you need additional cancer screenings, etc).  Try to update the record as often as you find out new information.  For example, as I mentioned above we just found out my dad probably has kidney cancer, so I need to make sure I add that to my family history.  If you're a computer addict like me, you might want to make a spreadsheet (in Excel, perhaps) to keep all the information.  This is an easy format to make updates or reorganize the information into a more usable form.  It would also make sharing the information easier, as you can email the file to family.

A nice idea is to share the information with your family, particularly siblings (because if they are full-blood siblings, their family history is the same as yours).  If you uncovered any noteworthy health trends or important items, you should share that part of the information with other blood relatives of the affected person (for example, if you found out your grandmother had breast cancer, make sure your aunts, uncles, and/or cousins on that side of the family are also aware).  And in this step, be sure to include your own health history (when my mom found out she had the conditionat that leads to narrow-angle glaucoma, she emailed her sister so my aunt could get her eyes checked before it was too late).  And of COURSE, be sure to share the information with your own children, and encourage (maybe help) them compile a history of their other parent's side of the family.

Step 5: Your health history and family planning
Your family history is part of your own health history in a way.  It helps explain why you are the way you are (health-wise) and may project what you should look out for.  It is also important to keep a record of your own health seems it should be easy to remember everything that's happened to you, but that can quickly become a challenge.  At the least, you should have a list of all diagnoses, surgeries and the year(s) they were performed, and recurring illnesses (such as bronchitis or infections).  If you saw a question about something on one doctor's forms, you're likely to see that question again so make a note of your answer (maybe you couldn't remember if you had chicken pox, so make sure you find out and know the next time you fill out a form). 

If your family and/or personal history is somewhat scary, you may want to consider the implications this might have for you as you plan a family (for those who have not yet started one but plan to).  I know I've asked myself and my husband if it's fair to have a child, knowing what's running around in our genetic pool.  Of course, for most people the issues aren't that dramatic; you probably don't need to question having a baby altogether (and for the record, I am planning to have babies, I just thought it through).  But, you may want to see if you are at risk for things like gestational diabetes or trouble conceiving.  The family history will be important to an OB-gyn who will know what could be related to birth defects (for example, two antibodies I have with my conditions can increase the risk my child might be born with a hole in his/her heart), and what steps can be taken to minimize the risk (be optimistic, many vitamins and even medications can help...for me, folic acid will help minimize the risk I mentioned!).  The information in your family history can also help long after the conception/pregnancy/birth stage.  To use myself as an example again, I know I'm going to be really careful about my children's sun exposure (it was my trigger), and be especially attuned to any complaints they have about joints, eyes, dry mouth, or other mystery symptoms.

Have hope, you've done a good thing!
After reading all that, I am a little worried that I've dragged you down into a deep depression.  Please don't dispair!  The point of this whole post and process is proactive hope.  I call myself a "pragmatic optimist"...rather than idly wish for the best, I want to do whatever I can to make the best happen!  THAT'S the whole point of a family history.  With this information under your belt, you can take real steps toward better health and care for yourself, your family, and your children.  THIS IS A GOOD THING.  Even if you uncover upsetting items in your family history, you've taken a step toward making something better in the future.  Feel good, you've done well!

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