TIP of the WEEK: Medical Appointments

There are many things that people with PWS have in common and one of them is lots of medical appointments. Here are some ways to manage all of those appointments:

1. When you are seeing a new doctor be sure to request a double appointment so the first half can be spent teaching the doctor about PWS. It is likely that, unless they are a PWS specialist, this will be their first encounter with a patient diagnosed with PWS.

2. Take someone with you. This is especially true if you are facing a difficult medical procedure or new diagnosis. When we are experiencing stress it is difficult to pay attention and take in all the information.

3. Ask for permission to record the appointment. If you cannot take someone with you it may be possible to record the appointment so you can be sure that you receive all of the information clearly.

4. If you or your child are not comfortable with the doctor, go somewhere else. You and your child have the right to be at ease with the doctor and his or her practice.

5. Always remember to bring information on ways to contact your local chapter and PWSAUSA.

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families and consultants, continuously learning and teaching about PWS best practices.