Why should I seek genetic counseling?

Learning that a genetic diagnosis may affect your family can feel stressful, confusing, and overwhelming at times. Flooded by uncertainty, the path ahead may seem rocky and unclear. Where do you even begin?

Designed to provide education, support, and guidance, genetic counseling can help families understand genetic risks and available testing, make use of genetic advances to maximize health, and build care, referral, and support networks. It offers a safe environment to explore your family's unanswered questions and concerns and can help you formulate a strategy for moving forward.

What are common questions that Moving Beyond a Diagnosis can help answer?
  • What do I do now? How do I make this feel more manageable?

  • Why did this happen? What does it mean? What will it mean in the days, months, and years to come?

  • How do I talk to my spouse about this? My siblings? My kids? The rest of my family?

  • How do I talk to my doctors about this diagnosis? What do I want to know? What do I want them to know?

  • How will our family navigate the complicated waters of information, providers, medical systems, and decision making?

  • Could this diagnosis be part of a larger medical or developmental picture?

  • Is it genetic? What would that mean?

  • Could it be inherited? Could it happen again in our family?

  • Could other issues (medical, developmental, or psychiatric) that I have or that someone else in my family has be related to this genetic diagnosis?

What does "genetic" mean?

For many years, scientists have recognized that the human genetic code is a type of instruction manual on how to build and maintain a human body. The "manual" includes instructions on development, growth, and repair. While the instructions may vary slightly from person to person, they are largely the same for most people.

Sometimes, however, even tiny changes in these instructions can lead to significant changes in how a body is formed and/or how it functions (its health). Sometimes, these changes in the instructions are known to build bodies that look or work slightly differently.

Are all genetic changes harmful?

Not all genetic differences are harmful. In fact, many genetic differences account for our natural human variability — what makes each of us special and unique.

A change may have no identifiable impact, may enhance our experience, or may sometimes lead to medical or developmental challenges.

Some medical problems are related to genetic factors, environmental conditions, and/or a combination of both genetic and environmental factors.

What can I expect?

For more than 30 years, genetic research has uncovered critical information that has allowed advancements in medicine to enhance health. Genetic counselors translate this knowledge into practical information. This may allow families to make more informed healthcare choices and assess risk of disease based on detailed medical/development histories. It also offers options related to testing, prevention, and other medical surveillance or intervention.

How is insurance handled?

Payment is due at the time services are rendered. Upon request, Moving Beyond a Diagnosis is happy to provide receipts that you may submit to your insurance provider for possible reimbursement. Coverage varies depending on individual insurance plans. Some flexible spending accounts may allow these costs to be included in pre-tax dollar spending.

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