Fertility and Genetic Testing
Family planning comes with a unique set of challenges for Rare Carriers. In this session, we discussed fertility, genetic testing, pregnancy, and more. We touched on sensitive topics revolving around ethics and personal choice.
This is an incredibly sensitive and personal topic for most Rare Carriers. Many are not even aware that they are carriers until they have an affected pregnancy, while others consider how their carrier status impacts their future family from a young age. Everyone’s experience is unique, but there are many shared themes.
In this session, we discussed how participants have approached family planning and how being a Rare Carrier impacted their decisions. For those that have not yet had children, we discussed how carrier status impacts their family planning.
We also discussed the ethics of genetic testing and the many options that are available to Rare Carriers as they approach family planning.
“My future went from planning on trying to start a family this fall after we get married, full of hope, excitement, and ready for every second to a giant question mark, so much uncertainty, worry, and even some dread or doubt about if this is even the right thing to do right now. We're both really struggling with it.”
- Jessica Clark
