Patient Wisdom

Patient Wisdom

Question 7: What tips can you share for discussing genetic conditions with children?


Confused about when to test a child for a hereditary colon cancer condition? 


Factoid: The National Cancer Institute offers sound advice on the topic of genetically testing children.

A child life specialist can be instrumental. The ‘FAP and Me: A Kid’s Guide to Familial Adenomatous Polyposis’ book helped us to explain to Ashlee what was going on with her body. - Tiffany Costello


It depends on what the child has experienced. If they are aware that a relative is affected, then it can be modeled around that knowledge. This is something common in our family that most other families do not have. It is okay to have this condition. The relatives with this who see a doc regularly can live long relatively healthy and normal lives. - anonymous


Be honest with children, they know when something is not right. Give them a little information at a time and then leave it until they come to you with any questions. Always let them know they can ask you anything. - Claire McIntosh


Having had to have this conversation with my daughter and hearing the words, "Will I die?”, is heartbreaking for any Mom. Teaming with a compassionate genetic counselor and teaming yourself with knowledge is key. Since then, I work to focus on the positive [by] educating her on new studies [and] ways to help others via FB and the [Familial Adenomatous Polyposis] Foundation. - Michelle Sutter


Be fully open, and discuss in simple enough terms for their level of comprehension. Do not speak from fear or anxiety, but calmly try to keep things in perspective. Some of us have poorer eyesight and need corrective lenses. Some of us have a disease [that] can be effectively addressed. Reinforce that the disease should not define us. - Frank Rider


It depends on the child, their age, and their ability to absorb and process information. I was completely honest with my son from the beginning and believe that the way I have responded to my adversity has set a positive example for him. He knows that I'm not powerless, even though I have Lynch. - Georgia Hurst


Talk to them about how they feel. I was very aware of what I had at age 9. They need to know what FAP is and what they can expect. Encourage them to be as normal as they can. - Teresa Weimer


Be honest and undramatic. - Samuel Duckworth Be honest from the start and let them come when you get checked. That way they won't be to scared of the hospital and all the people there. Kids know if a parent is sick. - Israel Gonzales Jr.


Be honest and up front, make sure they are around people that are going through similar situations with their age. Let them know what might happen, but [also] let them know what they can do to prevent and [delay] the major surgeries that will need to be done. Try to let them live as normal life as possible, [but] always be aware of any symptoms that arise. - Julie Scott


We have always been straight up about my history with our children and explaining that their Grandfather died at 42 years from colon cancer. If we knew then what we know now, he may have been with us much longer. With that, we all get checked to make sure we are okay. - Ed Minor


We knew when they took skin or blood samples that it was for research and would help us later on on life. [And] it has as I don't have to be an ileostamate like my dad. - Melanie Hirschi


My sister and brother-in-law, actually, were very accepting and open to me telling my niece and nephews whatever I felt comfortable sharing. They want their children to know that people are different. They want to raise them to be accepting of differences. - Kelly Livingston


I think kids handle it better than adults. They need to know simple answers and do not hide info. They can do a lot to stay proactive as well from their own point of view. - Sandra Redlands


I was very honest about my condition and how it will affect them. My boys have decided not to get tested until later in life. My one daughter is unsure when she wants too. I didn't want to force them into the testing. So we gave them the hard facts about it. - Anonymous


Kids may not be as worried about the diagnosis as you anticipate. I was diagnosed at 10, and my life didn't change that much afterwards. I rarely thought about the implications of my diagnosis as a kid. - Morgan


We were completely open and honest with all the kids and answered all of their questions. What children can imagine in their minds is much worse than the truth. - Suzanne Pilon


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