Be a Valuable Member of Your Healthcare Team

A key factor in your hypophosphatasia (HPP) treatment is having good communication with your healthcare team. Try these tips to improve the relationships with your doctors.


People with hypophosphatasia (HPP) should prioritize finding a knowledgeable primary care physician as they will be coordinating care with other specialists. But just as important as knowledge is having a good relationship and honest communication between patients and doctors.

Finding suitable and compatible doctors can take time and patience. It’s okay to ask questions or even interview doctors until you find one that you’re comfortable having an ongoing relationship with and one that is willing to work with you and your family.

As with every relationship, it’s a two-way street. Of course, doctors will have advice and recommendations for you but it’s incredibly important that you bring something to the relationship too. Take an active role in your management plan and come to your appointments prepared to discuss your symptoms and ask questions.

Here are some suggestions for how to be a valuable member of your healthcare team.

  • Learn as much as you can about HPP
  • Bring a list of questions to your office visits
  • Ask your doctor to clarify anything you don’t understand
  • It may be helpful to bring a family member
  • Discuss your level of satisfaction with your current treatment plan
  • Share information with your doctor
  • Consider a symptom tracker and bring it to your next visit
  • Keep detailed records of your history
    • Medications (including pain medication)
    • Test results
    • Fractures
    • Surgeries
    • Missed work or school days
  • Take notes
  • Ask for a referral to a doctor or specialist that has an interest or expertise in HPP, if needed

You can also request a list of doctors with experience and expertise in HPP from an organization called Soft Bones. Once you’ve found the right fit, make sure you have your medical records sent to your new doctor or specialist and keep the conversation going.

When you have questions about HPP, speak with your doctor first. Our informative articles and patient stories are frequently updated, so visit Stand with HPP when you are seeking support from the HPP community. We are here to help you find what you’re looking for and help you stay connected.