January 25, 2012

5 (Even Simpler) Steps to a Family History

In September 2009, in my blog's wee, formative days, I posted what I considered to be a basic 5-step plan for learning your family's medical history.  For once, I'm happy to report I think I've gotten a bit more succinct over the years, and the time has come to present to you an even simpler 5-Step Plan!  Learning, examining, and sharing your family's medical history is an extremely undervalued tool.  In the hands of the right doctor - or a diligent, educated patient - it can mean the difference between early intervention and late-game diagnosis.

Image found here.

What and Why?
What exactly is a family medical history?  And moreover, why should I care enough to invest the time into learning mine?  It's not going to change anything, afterall...

Particularly in the mysterious world of chronic illnesses, genetics seem to play a role in the likelihood of an individual turning up with one or more such 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.  Other times, the links are more direct and are passed on in the same ways as hair color, height, and body shape.  Either way, 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 (if done right) may raise some questions, but remember to look at it with rose-colored lenses: by taking the time now to find the concerns and questions, you give yourself (and others) the chance to plan for them before reaching a crisis! 

Step 1: Research your family history
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 in whom it appeared.  In particular, doctors want to know if a blood sibling, parent, or grandparent had a condition, but if you see a trend elsewhere (say, aunts and uncles), make note of that too.  Remember to examine all parts of your family, both mother and father's sides and each of their siblings and parents.  One way to make sure you don'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.  Additionally, some 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!

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)
Here, I identified each person by which side they were related on (i.e., instead of 'Uncle Joe', say 'dad's brother Joe').  Doctors usually want to know information in this format.  You may also want to list the age at diagnosis, which is useful in some conditions.  This is also 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).

Or, if you think like an accountant, this is a great opportunity to exercise those Excel spreadsheet skills...just sayin'....

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 would have indicated my increased likelihood for developing 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 with you to your doctor appointments.  It will be invaluable when filling out those tedious new-patient forms, and may be of interest even to your current caregivers.  If your family history is extensive or you have a complex health situation, consider giving a copy of your information to your doctor to keep in your record.  If you have "mystery symptoms" you haven't been able to piece together, use your family history as a starting point to discuss with your doctor to reveal a new direction you should explore.  Even if you are unencumbered by medical problems now, take the chance on a routine check-up to review your family history and make sure you are taking all precautions to keep yourself in good health. 

Update the record whenever you find out new information.  For example, if your mother develops osteoporosis, you'll want to add that to the lists.  Again, Excel is a great option for this - and it makes sharing the information easy, as you can email the file to family.

A nice idea is to share the information with your family.  If you uncovered any noteworthy health trends or important items, you should share that part of the information with other blood relatives.  In doing so, be sure to include your own health history.  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 history...it 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.

Your family medical history may have implications as you plan a family (if applicable).  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 I could have a child with fetal heart block), 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 this risk!).  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 all that work, you'll basically have a list of "WCGW" (what could go wrongs) - don't dispair!  The point of this whole 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 point of a family history.  With this information at your disposal, you can take real steps toward better health and care for yourself, your family, and your children.  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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