How Do I Talk to My Family about My Genetic Condition?
These three booklets are guides for newly diagnosed Gaucher, Fabry, and Pompe patients to help them share their diagnosis with family members. The booklets offer information on major signs and symptoms, how the conditions are passed down through families, and other condition-specific issues. They also contain more generally applicable information on family health history, as well as how to prepare for and start conversations with family members about health. The guides for Gaucher and Fabry are available in both English and Spanish. The Pompe guide is available in English.
Sometimes patients need information in smaller doses, particularly when they are newly diagnosed. These three brochures on screening and genetic testing for Lynch syndrome can be read together or individually, depending on how much information a patient is ready for, and focus on the importance of screening for early detection and disease prevention.
More resources on Lynch syndrome and screening:
- Cascade Genetic Screening and Public Health Practice: We often hear that, other than newborn screening programs, genetics isn't ready for prime time in public health practice. Yet the evidence is clear that strategies exist which can save lives and prevent disease. "Cascading screening" - for Lynch syndrome, hereditary breast and ovarian cancer and familial hypercholesterolemia - is one of those strategies.
- KinTalk: KinTalk is an educational and family communication website for individuals with Lynch syndrome. Check out the "Ask the Doctor" podcast series featuring UCSF clinicians who specialize in Lynch syndrome and talk about topics like colonoscopy preparation or the effectiveness of gynecological cancer screenings. KinTalk members have access to a social media platform where individuals with Lynch syndrome can post questions or share experiences about having Lynch syndrome.
- I Have Lynch Syndrome and When My Genes Don't Fit are two blogs by patients/advocates on living with a hereditary cancer syndrome.
