How can I find a good doctor in my area for Aniridia?
Since aniridia is a rare condition, some doctors may not be very familiar with it. The Vision for Tomorrow Foundation suggests asking a doctor if they have experience with patients who have aniridia. This is important because some of the common treatments of the eye problems in aniridia may actually be contraindications in this case. The Vision for Tomorrow Foundation also suggests posting on the Facebook Page (United Families of Aniridia) one's specific needs and requests from other aniridia patients and parents.
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What specialist doctors should I see with Aniridia?
Affected individuals will need specialists, likely both an ophthalmologist and a medical geneticist, but for affected children a sensitive pediatrician experienced with the age-group is the best place to start. A pediatrician will likely be the one to make the required referrals to the aforementioned specialists; additional specialists one may see include cataract specialist, glaucoma specialist, and pediatric ophthalmologist.
If I have Aniridia, what should my doctor know about managing the deficiency?
An aniridia patient's doctor should know that aniridia can be isolated or part and parcel to a genetic syndrome, as Wilms tumor-aniridia-genital anomalies-retardation (WAGR) syndrome. When accompanied by a syndrome, a patient requires additional screening and surveillance; for this reason, it is important to ask one's physician if testing, treatment, or monitoring for WAGR syndrome is needed. Furthermore, a doctor should also know that some common treatments for the secondary symptoms of aniridia are actually contraindications for an affected individual.