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Pediatric to Adult Care of Genetic Heart Disorders
At the Stanford Center for Inherited Cardiovascular Disease, we specialize in the care of patients and families with genetic disorders of the heart and blood vessels. Our care extends from the youngest to the oldest members of your family.
Care and Treatment of Inherited Cardiovascular Diseases
Genetic counseling is an important component of the services offered at Stanford's Center for Inherited Cardiovascular Disease. The goal of genetic counseling is to help you learn more about how the inherited cardiovascular condition in your family affects you and your family. As the conditions that we treat "run in the family" we want to be sure that each of our patients have a supportive place to find out more about what having an inherited condition means for them, for their family members, and for family planning.
Part of the initial workup at our center involves meeting with a genetic counselor. This meeting will include a discussion of what genetic testing is available for your condition and how such testing can help you and your family members.
The genetic counselor will guide you through decision-making about genetic testing, family planning, and medical management. The genetic counselor can also help you deal with emotions associated with having an inherited condition or being at risk for an inherited condition.
By reviewing your family history the genetic counselor will help you identify which family members are at risk to have the inherited cardiovascular condition that's running in your family. We will give you and your family recommendations for how to check for the development of heart problems in at-risk family members as well as any steps that can be taken to prevent heart problems.
The genetic counselor can also provide support and counseling to help you and your family deal with the emotions that arise when someone in the family has an inherited condition.
Genetic counseling appointment
A genetic counseling appointment usually takes about one hour. It can be helpful to prepare a list of questions that you and your family members have about the hereditary nature of the condition that's running in your family.
Our team can also connect with you additional support resources for families dealing with inherited cardiovascular conditions, such as support and advocacy groups and psychologists specialized in helping people deal with health challenges.
Genetics evaluation report
You and your doctor will received a detailed report summarizing your genetics evaluation. This report includes information about your condition, how it runs in the family, the chances for other family members to develop the same condition, recommendations for how family members should be evaluated, and the results of any genetic testing you have had.
We provide this report to help you remember the things discussed in your genetic counseling session and to help you share the information with your family, since much of the information discussed applies not just to you, but to your family members as well.
Review and assessment of your family history
The genetic counselor will review your family health history in detail and this information will be used to create a family tree (pedigree). It is helpful to speak to your relatives prior to this visit to obtain as much information about your family history as possible. This will help you and your family obtain the most out of the visit to our center.
Important things to look for you in your family history include:
Heart attacks and sudden unexplained death, especially at young ages
Reviewing your family history helps our team determine which side of the family the inherited heart condition came from. The genetic counselor will also tell you what the chances are for other family members, such as your children, to develop the same condition. In some cases, the family history is important in helping the team make the right diagnosis for you and your family. It may be helpful for the team to review family members' medical records.
Screening and prevention recommendations for your family
When one person in the family gets diagnosed with an inherited heart condition it's important that other family members get checked to see if they have the same condition. Many inherited cardiovascular conditions are difficult to diagnosis or develop with age, making it important that family members get evaluated again, even if their initial evaluation is normal. We will provide specific recommendations for which family members need to evaluated, what tests they should have, and how often they should have them. In some cases avoidance of certain medications or activities can help keep family members' hearts healthy and reduce the chances of cardiac arrest or sudden death.
Genetic testing is available for many inherited cardiovascular conditions. As part of your genetics evaluation, the genetic counselor will discuss what tests are available for the condition that is running in your family and how such tests can help you and your family.
The genetic counselor will also help you understand the limitations of genetic tests and what the results of genetic testing will mean for you and your family. If you decide to have genetic testing, the genetic counselor will help arrange the test. She will also discuss the results with you once they are available.
For individuals with healthy hearts and a family history of an inherited heart condition, genetic testing can sometimes help predict whether they will develop that heart condition in the future. Through your discussions with the genetic counselor you'll explore the implications of learning this predictive information about your health.
Many families have concerns regarding the risk of insurance discrimination based on a positive genetic test result. The genetic counselor help you learn about current legal protections against genetic discrimination and how they apply to your case.
Often families with an inherited cardiovascular condition want to learn more about their options for family planning. The genetic counselor can help you explore the range of options that are available and guide you through deciding which option is right for you.
Many couples choose to conceive naturally and then test the baby after it's born. Others opt for conceiving naturally and using genetic testing during pregnancy (if the mutation causing the condition is known). Couples who prefer to avoid passing on the hereditary heart condition that is running in the family may choose to adopt or use donor eggs or sperm.
One option that reduces the chances of passing on the hereditary heart condition is called preimplantation genetic diagnosis (PGD). Embryos are created through in vitro fertilization (IVF) prior to pregnancy and genetic testing is used to select embryos that do not have the predisposition to heart problems. PGD is only an option if the genetic mutation causing the heart condition in your family has been found through genetic testing. If you are interested in PGD our genetic counselor will work with you to find an IVF program that you are comfortable with and will help to coordinate the process. We collaborate with IVF and PGD clinics nationwide.
Deciding which family planning option to pursue is a very personal choice that a couple makes based on a variety of factors. Different couples choose different routes. The genetic counselor will assist you in making these decisions, based on your perceptions of the risks and benefits, your family goals, and your personal and religious beliefs.
Do you know if you're at risk for heart disease? How healthy is your heart? In recognition of American Heart Month this February, stay heart healthy and celebrate your heart with us.
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