The decision whether and how to have children when you are at risk to develop HD is a difficult one. Some people choose to have children and others do not. Some people pursue prenatal testing (testing during a pregnancy) or pre-implantation genetic testing (testing prior to a pregnancy conceived with IVF) and others roll the genetic dice. For some people, knowing whether they have the HD gene alteration helps them with these decisions.
Our HDSA Center of Excellence genetic counselors can help individuals and couples identify which options are most compatible with their personal belief systems and life goals. Families interested in learning more about their options are encouraged to meet with a genetic counselor prior to considering a pregnancy.
For an excellent summary of the reproductive options available check out HD Buzz’s “Making Babies: Having a Family, the HD Way”.
Other helpful resources include:
HelpCureHD – Non-profit organization helping couples at risk for HD cover the cost of IVF and pre-implantation genetic testing. Run by Joe Smith, Houston Astros pitcher, and his wife, Allie LaForce, reporter. The couple helped 26 couples in the last year!