Speaking with Your Healthcare Provider

Communicating with your healthcare team about your illness helps to ensure that

You are getting appropriate and up-to-date care

You are an active participant in your care

You can work together with your healthcare team to make decisions that are right for you

Healthcare providers typically have busy schedules, so it is always a good idea to come prepared for each appointment. Take notes during the appointment and after, you should ensure that you follow instructions given to you. Call your healthcare provider if you are unclear about the instructions and if you have follow-up questions, and create a list for your next appointment.

Why is an open and straightforward relationship with your healthcare team important?

  • Diagnosis: By sharing symptoms, even embarrassing ones, honestly with your healthcare provider, you improve your chances of a timely and accurate diagnosis
  • Disease Management: An open dialogue with your healthcare provider will allow you to ask questions, even the same question more than once, such as admitting you have may not have understood something from a previous conversation
  • Education: Your healthcare provider is your main source of information about your illness, and you should feel comfortable asking questions and getting clarifications on all medical, emotional, and even financial issues like insurance

Sanofi Genzyme offers a wide range of Support Services to people with Pompe disease and their families.

Getting the most out of your Appointment

Make the most of visits with the healthcare coordinator and team by going to an appointment prepared, which may include writing information down and taking some things with you.

  • Symptoms: Clearly relay your symptoms, as this helps your doctor determine the underlying cause
  • List of medications you are currently taking
  • Medical history including information about diseases that are common in your immediate family members such as your parents and siblings
  • Concerns that you have regarding your illness/challenges you are facing with your diagnosis, and an accurate picture of your habits and day-to-day life
  • Disease management: What are my options for managing my disease; what supportive care options are available to me?
  • Other management-related questions: How much will supportive care cost? Is it covered by insurance?
  • Information and recommendations: Any questions you might have about Pompe disease or about relevant tools/resources for patients with Pompe disease. It is best to leave the appointment with an understanding of your condition and your healthcare provider’s plan for you
  • It may be helpful to go through your notes and ensure you have understood the next steps in your disease management
  • If you experience unusual or unexpected symptoms, or have questions about any disease management options you may have chosen, call the doctor/nurse
  • Writing down any follow-up questions you think of for your next visit could also be helpful