Research your medical history before illness catches you off guard
Published: Monday, August 29, 2011, 6:02 AM Updated: Monday, August 29, 2011, 6:35 AM
Getting it in writing: Ellen Atkins, right, with her daughter, Maia Atkins-Garrison, at Gilda's Club. Atkins gathered health information from relatives at a recent family reunion.Ellen Atkins’ surprise for the 95 people at her family reunion was about as popular as fire ants at a picnic, at least at first.
It came tucked into pink envelopes, which everybody was invited to open as the meal came to an end.
Before the reunion, she’d told folks she wanted to talk about family history, but they weren’t prepared for her opening line.
“I want to find out what Big Mama died of as far back as we can go,” Atkins said, as they unfolded copies of a Health Heritage Tree from Susan G. Komen for the Cure.
“Specifically, I want to start with cancers first, then go back and add other diagnoses.
“As soon as I said that, I could see the turnoff — mostly from the men,” said Atkins, minority coordinator and manager of the Sister-to-Sister program, a breast cancer support group for women of color at Gilda’s Club Grand Rapids. “The women were more receptive, but they wanted me to hustle.”
What they discovered in probing the past and present gave them glimpses into a future they can influence now.
“The difference between the beginning and the end was like turning on the lights. It was amazing,” Atkins said.
“We found breast, colon and lung cancer and one family member with kidney cancer. We found a lot of diabetes and heart trouble and some dementia, including in some folks in their 50s.
“People don’t want to know about what they fear,” Atkins said, “but once you know it, it gives you a chance to be proactive about your own health or to bury your head.”
From the U.S. surgeon general to Susan G. Komen for the Cure, family health history initiatives are hot.
Common diseases such as heart disease, cancer and diabetes, and rare conditions such as hemophilia, cystic fibrosis and sickle cell anemia can run in families. Knowing our history can help predict our risk and give us a shot at it before it takes aim at us.
Like so much else in life, just because we know something’s important doesn’t mean we do anything about it.
The U.S. Department of Health and Human Services reports that although 96 percent of Americans believe that knowing their family health history is important, only about one-third of us have ever tried to gather and write it down.
Family reunions are a great time to probe the depths with relatives you don’t get to talk with every day, Atkins said.
“Great-grandmothers are history books,” she said simply.
The big thing in her family were the cancers. They found breast cancer went back 65 years.
“My children were enlightened and concerned,” Atkins said.
Atkins and her husband of 45 years, Will, have four children, ages 38-43, five grandchildren and one great-grandchild.
Granddaughter Lisa, 20, was very concerned, and the history will be valuable should she decide on genetic testing.
Helping high-risk groups
The Health Heritage Tree is an outgrowth of a Komen initiative called Circle of Promise focused on African-Americans.
African-Americans have a higher death rate from breast cancer than other populations, said Rita Rivard, registered nurse and community health program coordinator for the West Michigan Affiliate of Susan G. Komen.
She cited economic and cultural barriers to accessing care, and a tendency to have more aggressive forms of cancer and later-stage diagnoses.
Komen advocates knowing family history, regardless of background, because it does play a role in breast cancer.
“Even though having a family history of breast cancer does increase your risk of getting it, most women who are diagnosed with breast cancer do not have a family history of it,” she said.
If there is a family history, your doctor may change the screening recommendations for female family members.
Rivard knows that firsthand: A breast cancer survivor who was diagnosed at 41, she has been out of treatment for eight years.
As a result of her history, “my daughter will start mammograms 10 years earlier than the age I was when I was diagnosed” rather than at the generally recommended age of 40.
Trudy McKanna, president of the Michigan Association of Genetic Counselors, Inc. and a genetic counselor with Spectrum Health Butterworth, has a personal and professional interest in family health histories.
McKanna drew a family health history tree and included it in her children’s baby books. Son Will, 5, already has noticed it and asked about it.
“Genetics are only one part of your family history,” she said. “Knowing your family history tells you what you need to focus on for your own health, including environmental factors.
“If there is no family history of a certain disease, people may think I’m not going to get it, but they may not be asking the right questions.
“A family health history can help to know where to start evaluating a child who has multiple things going on, and may help a doctor narrow down possibilites,” she said. “Sometimes, we diagnose the child and the adult at the same time.”
Telling vs. asking
How hard is it to probe the personal past?
“In my experience, it’s harder to ask than it is to be asked,” McKanna said. “Most people don’t mind being asked. People want to provide the information so their kids and grandkids can be healthy. Once you ask, you often get way more than you ever expected.”
It’s key to remember to update what is literally a living document: The people in it change, as does their health.
Atkins said there were people at her reunion who didn’t want to know their family’s health history.
“That speaks to our heritage as African-Americans,” she said. “‘If it’s God’s will for me, I’m not going to worry about it.’
“One of my relatives said, ‘Girl, stop worrying me about checking my breasts. We’re all going to go home sometime.’
“She went home in February of this year, not from breast cancer, but from lung cancer, which had metasticized into her bones and was diagnosed in late stage.”
All of the different cancers that had touched the family “were a wakeup call to both my oldest daughter, Lynn, and my youngest daughter, Maia.” Not so much for sons Mel Junior and Michael.
Atkins herself was not surprised by the results, but she was moved to become more proactive about her health. The history of cardiac problems and diabetes were powerful incentives to go on a diet, and she’s lost eight pounds.
The health history “made me more conscious of my health. I’m not afraid to die, but I’m afraid of being a burden on my children. Don’t start a journey your children will have to finish.”
Email: health@grpress.com
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