Cogan's Syndrome This resource was developed to help patients and their family members better understand Cogan's Syndrome (CS). This rare disorder is defined as Nonsyphilitic Interstitial Keratitis (inflammation of the eye) and Bilateral Audiovestibular Deficits (hearing problems and dizziness).
Time Is Of The Essence Given the rarity of this disease, it is often difficult to get a proper diagnosis and treatment. Unfortunately, TIME is a big factor with a small, limited window of opportunity to get the right diagnosis and treatment. Chances are you have been diagnosed with CS (or a loved one has) and you have been researching it. You may have been reading many medical articles from a variety of medical schools and doctors. There is not one place where you can actually talk to people with CS. Affectionately called "coganites" we are slowly growing into an area that for some reason is still a mystery to some, and absolute horror for others. One thing for sure is to research all the little pieces first, then you will get an idea how it fits under the heading of Cogan's syndrome. As you begin your research of CS, you will come across a few terms such
auto-immune disease, vasculitis, arteritis. It can become very confusing
to actually define what CS is.
About Us Established in 1989, the Cogan's Contact Network (CC) was founded by Anthony Yuppa, a young man who found his life was turned inside out when he “woke up deaf” in one ear, was seeing double, was misdiagnosed, and then went deaf in both ears 4 weeks after the onset of initial symptoms. Becoming deaf was the worst part since there was no way to “talk” with anyone about it and worse, there was no way to talk with anyone who knew how it felt. Determined to make a difference, he formed this network to bring CS sufferers together to share their experiences and strategies for coping with the disease.