MPS I can affect many body systems. This may mean visiting a variety of specialists and physicians. Being involved with your medical care will require a good partnership and communication with your physicians and will help you educate yourself and others about MPS I.
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.
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.
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 and choices with each other, and share updates on their area of expertise.
You may find it helpful to plan ahead with specific goals for a visit:
It’s important to understand the disease management options that are available. Here are some questions to consider asking your doctor.
May 15th is International MPS Awareness Day. Join Sanofi Genzyme as we support raising awareness of MPS disease disorders and honoring the individuals and families who are affected.