I had heard of Waardenburg Syndrome but had never actually seen it until one day in college I met a girl whose hair was black and streaked with white. As rare as it is, I have had e-mails from families seeking information on Waardenburg.
What are the characteristics of Waardenburg? First, both eyes may be of a different color. A person could have one blue eye and one brown eye. While it may cause hearing loss, only one out of five people with Waardenburg are hearing impaired enough to need amplification. There are other features, such as spacing of the eyes, but they are really quite minor - so minor that Waardenburg sometimes is not identified. Balance problems may also be associated. Scientists have long since found the gene that causes Waardenburg.
How common is Waardenburg in the deaf community? No one knows. One source estimates that two or three out of every hundred deaf children may have Waardenburg. About 20 percent of people with Waardenburg will have hearing loss. The Boys Town National Research Hospital Research Registry for Hereditary Hearing Loss tracks the incidence of Waardenburg in the deaf and hard of hearing community. There are two types of Waardenburg: Type I and Type II. Type I involves the eyelids, and Type II does not. Deafness occurs more frequently with Type II.
Comments on Waardenburg
My son is 11 years and has Waardensburg Syndrome. He is deaf in one ear and has a brown eye and a blue eye. He also has different pigment in his skin on his arms and legs.. White patches...I have not had any problems with anything about him except his hearing. He has to wear a monitor that the teacher also wears so that he can hear his teacher. He is a handsome, smart, bright kid. I have noticed that he reads your lips allot. I have also noticed that he don't like to talk to others about his deafness, he would rather pretend that he heard them by just agreeing with them to keep him from embarassment. I tell him the the public can be cruel no matter what you have or don't have... that you just have to love yourself.
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I was diagnosed with waardenburg syndrome when I was five. I have two tone eyes (blue and brown) and a bilateral degenerative hearing loss, and the wide set face I also have a curve in my upper spine although not real noticeable my posture is poor. I also have had organ failure that my doctor believed at the time may have been one of the traits; my kidney's failed for no reason. The doctor who diagnosed me worked under Dr. Waardenburg so I became his "guinea pig" so to speak. And because of my unusual eye color I had many pictures taken of my eyes, measurements of my face and hearing tested quite frequently. I have seen many specialists since then regarding my hearing, which is degenerative and I lose the same amount of hearing in each ear and I am equally hearing impaired in each ear which surprises many specialists. Fortunately my daughter and my granddaughter show none of the traits.
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