WAGR syndrome is a very rare disorder. It is not unusual for doctors to be unfamiliar with the conditions associated with it. But parents who are well-informed can help their child's doctors
to provide good care. Here are some suggestions for developing a strong partnership with the doctors who care for your child.
Before an appointment, write down your questions and anything you'd like to discuss with the doctor. Take the list with you, and write down the answers to your questions as they
Take someone with you to appointments, if you can. If your infant is fussy or your child needs attention, this other person can care for her while you are talking with the doctor.
Prepare the Doctor
Start with an introduction. Discuss whether the doctor is aware of WAGR syndrome, and what they might need to know about it.
Keep a file of paper copies of your child's medical records, or keep online patient portal apps on your phone, so you can share laboratory results or other reports if necessary.
Share written information about WAGR syndrome, but keep it brief.
Remember that a positive attitude will get you a lot further than a negative or aggressive one.
Try not to be intimidated. Doctors put their pants on one leg at a time, just like the rest of us. They also appreciate patience and understanding as much as the rest of us, and
these can go a long way toward building a good relationship.
If the doctor says his time is limited, suggest making another appointment for the purpose of addressing your questions.
If the doctor seems reluctant to discuss something with you, say so. For example, “Dr Smith, I would really appreciate more detail on this, if that is possible. I sense that
you are reluctant to say more.” This statement puts the ball in his court and gives him a chance to explain.
Good Relationships Take Time
Sometimes relationships with doctors can become strained. If this happens, consider the qualities that are truly important to you in a physician: knowledge, skill, and experience,
for example. Then consider that there are things that are nice to have, that are not vital to good care, such as a sense of humor, or a warm and friendly personality. It’s
wonderful when a doctor has all of these qualities. But when they do not, consider your priorities carefully when deciding whether to continue the relationship.
Educating yourself about WAGR syndrome is a vital part of being a good partner in your child's care. But be careful about how you present information to the doctor. For
example, sharing information from this website is more likely to be helpful than sharing a posting from Facebook.
When you offer information, do it in a positive way. For example, you can say, “I have read that children with Aniridia should be examined for glaucoma every 6 months. Could
we discuss the pros and cons of doing an exam under anesthesia?”
Cultivate a good relationship with the doctor’s staff too. A smile or a kind word of appreciation can go a long way toward making the nurses, technicians, and office staff
your allies in getting the best possible care for your child.
International WAGR Syndrome Association
PO Box 2875
Montgomery Village, MD 20886