Just for Parents - Your Guide to Talking to Your Daughter About Galactosemia and POI

What is POI?

For Women with Galactosemia and POI

Other Resources

Glossary

If you just found out about POI in women with galactosemia, you may feel overwhelmed or like this is “just one more thing” about galactosemia that you and your family need to deal with. You may also feel sad that your daughter may not be able to have children. Some parents find it hard to talk to their daughter about POI. Many studies have shown that family support is key to helping young women cope with POI.

Five things to think about when it comes to talking to your daughter about POI:

1. Many families of girls with galactosemia learn about the potential of POI when their daughter is very young. This means that you have time to help your daughter prepare for and cope with POI from a young age.

2. Some parents are tempted to keep POI a secret from their daughter. This is most often because they want to protect their daughter from feeling sad or stressed. However, studies have shown that keeping this information from a young woman can, in fact, hurt her ability to cope with POI.

3. It is normal to feel sad, upset, or angry when you learn about POI and galactosemia. However, it is important that you address these issues in yourself early so that your daughter does not sense that you are disappointed or upset. A parent’s long term grief about his or her daughter’s POI can make it very hard for a young woman with galactosemia to cope with and adapt to POI.

4. One of the top reasons that parents don’t discuss POI with their daughters is that they feel they do not have the resources they need to talk about it and help their daughters cope. This guide will help you get ready to talk about POI. If you need more help understanding POI and how to talk to your daughter about it, talk to your doctor or a clinic social worker or psychologist. Some parents also find it helpful to talk to other parents who have been through a similar situation. The “Other Resources” section of this guide lists groups for parents of children with galactosemia and support groups for people with POI.

5. Since girls and women with galactosemia may be dealing with other health problems, it is hard to say exactly when you should start talking to your daughter about POI. You will want to think about your daughter’s age, her cognitive skills, and the severity of her galactosemia when it comes to sharing this information. Work with your daughter’s doctor and other clinic staff to tellyour daughterabout POI in an open and honest, yet developmentally appropriate, way.

Tips for talking to your daughter about POI

• Look for developmentally appropriate ways to talk to your daughter about POI from a young age.

• Try to create a family setting where a woman’s femininity is not defined by having children.

• Show positive examples of alternative ways of becoming a parent, such as adoption.

• Show examples of how children can play a key part in a woman’s life even if she does not have children of her own.

• Your daughter may have questions about POI that she is not comfortable asking in front of you. When your daughter learns about POI, you may want to suggest that she spend some time with her doctor by herself. This will also help your daughter get ready to transition to adult healthcare.

• POI is complex. Encourage your daughter to ask her doctor a lot of questions about POI. Tell her that it is okay for her to ask her doctor to repeat something or explain it differently if she doesn’t understand.

• Don’t leave dad out! POI is a woman’s health issue, but leaving her father (or any other key males in her life) out of the discussion may make your daughter feel that POI is something to be ashamed of or something that she shouldn’t share with the trusted males in her life.

• In addition to family support, social support helps women cope with POI. Remind your daughter that she is not alone. Encourage her to talk to other women with galactosemia who have also been told about POI.