I’ve always thought it was probably a good idea to know your family medical history, but until recently, it was never something to pay much attention to.
Because of a family history of breast cancer, I had my baseline mammogram at age 35. After seeing an OB/GYN this year for a checkup, she recommended that I see a genetic counselor given my family history. I didn’t think I needed to do that, but I thought it would be interesting.
During my meeting with the genetic counselor, I realized that I did not know ANYTHING about my family. The counselor peppered me with billions of questions:
- “How many males and females on your mother’s/father’s side?
- Are they full brothers and sisters?
- If not, who are their parents and did they have any issues?
- What about the children of your aunts and uncles?
- When were they diagnosed?
- Are they still living? What did they die of? When?”
And on and on.
After that appointment, I called my parents and told them all that the counselor told me about determining the level of risk for developing something like cancer. We never talked much about family medical history. I’ve always kept tabs on the lupus connections, and I knew about a family history of breast cancer and glaucoma, but it wasn’t something I wrote down, and the information was always vague.
So after having this discussion with my parents, I uncovered some important information about members of my family from different generations and the illnesses they had. It got me thinking that I should be writing this down for my future children and their future children so that they have a full history and can provide their doctors with the right information.
Knowing helps with treatment decisions
Just to give you an example of how important it has been for me to know about my family medical history, I am treated for lupus with prednisone. Among side effects of prednisone (i.e.: weight gain), some people experience increased eye pressure. Years ago I went to my ophthalmologist because my eyes felt ‘funny’: tight, as if they were “full”. She checked the pressure in both eyes and it was high. If you have high eye pressure (intraocular pressure), you may develop certain eye problems like glaucoma if you are not treated.
The ophthalmologist was blown away that I could feel the increase in my eye pressure because it is not something that people can feel. My ophthalmologist asked if I had a family history of glaucoma, and I do, which puts me at a higher risk for developing it. With this information, my eye doctor and I came up with a plan to monitor me more closely, especially when my prednisone levels increase. Sometimes that means coming to see her every few days when the dose is high to check the pressure.
You learn something new everyday…
Recently, I saw another doctor to help me figure out how to control my weight since I go on this yo-yo of gaining and losing the same 40 pounds once or even twice a year, mostly linked to my prednisone dosage. I am not a perfect eater, but I make an effort and go to the gym a fair amount. I was frustrated that given my hard work, nothing was happening. The doctor asked me many questions, which included if there is a family history of diabetes. I shared with her that I did.
She explained to me that there is a prednisone-insulin cycle that may be contributing to the difficulty losing weight, but also increasing my risk for developing diabetes. I’ll write it down verbatim as I am still working on understanding it:
Prednisone creates an insulin resistance which increases the concentration of insulin in the bloodstream. Insulin increases fat cells and fat cells create more insulin. Over time, this can lead to diabetes.
With these three experiences, I’ve felt the responsibility to gain more knowledge about my family history, including details about any health issues, because in addition to managing the lupus, these family health trends affect how I am treated and the follow-up care I receive.
Knowledge is power
Many people find it hard to talk about personal health issues in the family, mine included. Some people don’t feel comfortable revealing certain things because they are private matters and it’s “just not something we talk about”. I am trying to halt that cycle in my own family. There are just too many things that I need to know in order to manage my own health. Prior to being diagnosed with lupus, my parents never talked about the fact that mom had lupus. But afterwards, it became an open topic and also a bonding opportunity.
I may not get all of the information that I need since there are a lot of family members who are no longer with us, but it’s still worth a try to gather as much as I can for the sake of not just myself, but the entire family and future generations.
So, far from being a scary thing to uncover serious issues, knowledge is power. Make sure to share that knowledge with your doctors so that you get the care and monitoring you need.
Here are some templates I found online:
The U.S. Department of Health and Human Services (HHS)
Prevent Cancer Foundation
National Genealogical Society