Patient Wisdom

Patient Wisdom

Question 10: How did you benefit from working with a genetic counselor? 

 

Factoid: Learn the benefits, risks, and how to find a genetic counselor by clicking here.

Coming under the care of a genetic counselor felt like I suddenly had my own personal health care advocate. She worked with the insurance to make sure tests were covered, spent a tremendous amount of time discussing with me potential risks that I was unaware about, and really made sure that I was well taken care of. Every patient should have an opportunity to work with one…especially if you are not also under the care of a specialist. They are soooo knowledgeable about our syndromes! - Travis Bray

 

It helped me understand the implications of the syndrome, the recommended annual screenings involved, and the benefits of prophylactic surgeries. - Anonymous

 

She helped me to set a conservative approach for treatment. For example, since I am undiagnosed, they are treating me as if I have AFAP. As such, upper endoscopy screening will be required every 3 years in addition to annual colonoscopies. - Brooke Porretti

 

It helped my husband and I determine the best course of action for us and our future family. - Ruth

 

Learning about any new research studies. - Anonymous

 

I learned a lot about the disease and the type of mutation I have. It provided information on what to expect in the future. - Allison Brewer

 

The councillor fully explained what Lynch Syndrome was and how it was passed on through families. - Karen

 

To be completely honest, I had a negative experience with my genetic counselor but, I attribute that mainly to the fact that those interactions occurred immediately after my diagnosis which left me a little disgruntled and in no mood to talk to people telling me "I had options.” I also felt that they downplayed the multi-faceted nature of F.A.P. - Dakota

 

They give you advice on having kids and on your specific mutation. They'll also give advice on your surgery too. - Anonymous

 

The first time I worked with a genetic counselor was 1983. He was the first to help me understand the nature of the disease and the importance of following myself and my children. - Sandra Bunnell

 

She educated me on the disease. She linked me up with another patient who has the disease and we've developed a great friendship that has comforted me in so many ways! - Brian Hanson

 

Knowledge is power. For those that know they have it they are equipped to manage the disease & stay on track with the testing. Surgery is not a cure all. This is a life long condition that has to be monitored & not ignored. - Michelle Sutter

 

It helped me understand the implications of the syndrome, the recommended annual screenings which are involved, and the benefits of prophylactic surgeries. - Georgia Hurst

 

I learned from them about the risk with family, and having children. At the time of having been diagnosed, I can say its overwhelming and its a good thing to clarify certain aspects and be aware of potential dangers in having children. - Anonymous

 

I don’t feel like a ticking time bomb. It was helpful to find out about MLH1 online. I’m more confident in myself now. - Marguerite Winters

 

He is so nice and so caring. He has been the only [medical professionals] who has given us the time of day and has spent hours with us. - Stephane Cormier

 

When we met my husband's genetic counselor, it was a tremendous relief. Finally, we were speaking with someone who could answer ALL of our questions about the disease. I will never forget that day because I felt like we were no longer alone in fighting for his health. This continues to be true to this day. My wish is that everyone with a hereditary condition be able to meet with a genetic counselor at least once. - Shawnie Bray

 

I understood more as they had broken through the genetic code and there is a lot more info.  I know it also helped my daughters understand the situation.  I have gone back and researched relatives and death certificates in my old genealogy data.  - Sandra Redlands

 

When I was first diagnosed, my husband and I received genetic counseling.  Many of the questions we had were answered and the counseling helped us to understand FAP much better and how it would affect us and our children. - Tammy

 

Our entire family was able to meet with her and we put ALL of our questions on the table. It was very cathartic and she was able to give us great resources as well as check in with us over the 4 years since our testing. - Suzanne Pilon

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