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Genetic testing for people with ALS

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Benefit: Planning for your family’s future

With genetic testing, you may find out if your children or other people in your family (like siblings or cousins) may be more likely to develop ALS or related conditions. Some people living with ALS use this information to plan for their family’s future.

For example, some people may choose to see a doctor who specializes in reproductive health and pregnancy. A specialist can help you explore ways to have a baby without passing down genes connected to ALS. This could include using donated eggs, embryos, or sperm, getting pregnant through in vitro fertilization (IVF), and getting genetic testing for your baby during pregnancy. Other people may choose not to have biological children to avoid passing down genes connected to ALS.

If you find out that ALS runs in your family, knowing that information could help your family members plan for the future, too. If you choose to share your genetic testing results with family members, your doctor or counselor may have suggestions to help you start those conversations.

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