When you meet with a genetic counselor, it’s important to bring all of the information you have about your family health history, including any family members with health conditions, including intellectual disabilities, autism, birth defects, cancer or other diseases.
A good way to start is to create a family tree that includes you, your brothers and sisters, your children and your parents. If possible, expand your family tree to include your nieces, nephews, aunts and uncles, grandparents and cousins.
Then you should try to gather information about your family’s medical history, including:
- Age or date of birth, and cause of death for those who have died
- Medical problems any of them had and at what age (even approximately) they were affected, including:
- Abnormal sexual maturation or delayed puberty
- Birth defects (spina bifida, cleft palate, heart defects, etc.)
- Heart abnormalities
- Kidney disease
- Learning problems or intellectual disabilities
- Mental illness
- Multiple pregnancy losses or babies who died in infancy
- Unexplained medical conditions
- Unique skin spots or patterns (cafe-au-laits, shagreen patches, port wine stains, etc.)
- Very tall or short stature compared to rest of the family
- Vision or hearing loss at a young age
- Young/early deaths due to known or unknown medical conditions
- For those who have medical problems, include any information that might be helpful, such as whether they smoke, exercise, are overweight, etc.
Here are some other sources that might be helpful as you collect your family history:
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