Talking with Your Doctors

MPS I can affect many body systems. These may mean visiting a variety of specialists and physicians. Getting involved in your treatment and medical care will require a good partnership and communication with your physicians and will help you educate yourself and others about MPS I.

Finding the right doctors

It’s important to choose a doctor that you and/or your child feel comfortable with. Consider the qualities that are important to you. Make a list of those qualities. For example, do you prefer a doctor who uses clinical language or one who speaks in layperson’s terms? MPS I is a rare condition, so many doctors may not have extensive experience with the condition. Finding a doctor who is knowledgeable about MPS I or willing to work through the issues with you is very important. You may want to meet with several doctors before making a final decision on one that you feel communicates in a manner appropriate for you and understands your needs and concerns.

Asking questions

Don’t be embarrassed to ask your doctors questions if you need more information or if there’s anything you don’t understand. If something doesn’t make sense, ask your doctor to explain it again differently and to define any new words. You may want to try repeating what your doctor has told you in your own words so you can be sure you’ve understood.

Communicating with multiple physicians

The doctors are your partners in managing MPS I. Good communication will help you get the most out of your visits.

This applies to your doctors as well. A team of MPS I doctors may work in various locations, hospitals, and specialities. Communication between the various doctors may help insure they consider the full picture for your care, talk through disease management options and choices with each other, and share updates on their area of expertise.

Preparing for visits

You may find it helpful to plan ahead with specific goals for a visit:

• The reason for the visit?
• What is new that the physician should know?
• What are the symptoms or issues that need primary attention?
• Do you have questions about specific aspects of MPS I?
• Are there other questions that you’ve had recently that are unrelated to the visit but that could also be addressed?

Questions about treatment options

It’s important to understand the treatment options that are available. Here are some questions to consider asking your doctor about treatment:

• What treatment options are available?
• How would a treatment option impact other systems of the body or conditions caused by MPS I?
• Of these, which may be appropriate for me (or my child)?
• How and when is the treatment usually given (for example, is the treatment a one-time procedure, or are repeated treatments required on a regular basis)?
• What are the side effects?
• How will it interact with other medications and treatments?
• How much will it cost?
• Is it covered by my insurance policy?
• What benefit should I expect?
• For symptoms that cannot be treated, how else might I be able to manage them?

Keeping up to date

There are often new publications, new information, or new services that could be offered to MPS I patients and families.

An MPS society or patient group in your area will often be a good resource for keeping up with these and then asking your physicians for more information.