Cogan’s Syndrome Changed This Woman’s Life Forever

According to a story from FOX31 Denver, Kelly Conley of Arvada, Colorado saw her circumstances change dramatically when she first began experiencing symptoms of Cogan’s syndrome, a rare disease that affects hearing and vision. Her first symptom was severe vertigo that lasted for ten days straight and completely threw off her balancing capabilities. She had to turn down the job offer she had gotten just three days prior. Since then, new challenges and symptoms have appeared at a steady pace.

About Cogan’s Syndrome

Cogan’s syndrome is a rare autoimmune disease which is most characterized by inflammation of the cornea and hearing problems. As an autoimmune disease, it is caused by the immune system mistakenly attacking health body tissues. Only about 200 cases of Cogan’s syndrome are known to science. Symptoms of the illness include vertigo, tinnitus (ringing in the ears), hearing loss, vision loss, fatigue, weight loss, and fever. In more serious cases, vasculitis, or inflammation of the blood vessels, can cause serious organ damage and can even be life-threatening. Onset of the disease is relatively early in life, often in the 20s or 30s. There is no cure for Cogan’s syndrome, but the disease can be treated with corticosteroids, immunosuppressive drugs such as methotrexate or cyclophosphamide, and cinnarizine (to improve hearing and treat vertigo). To learn more about Cogan’s syndrome, click here.

Kelly’s Story

Within four month of her diagnosis, Kelly began to experience serious hearing problems and eventually had to get hearing aids. Unfortunately, her hearing ability is practically gone; she communicates with others using an app that converts a speaker’s voice into text. As a mother of two sons, the experience of losing hearing has been devastating.

“It’s lonely. I miss my kids’ voices.” – Kelly Conley

She also underwent cataract surgery over the summer as the inflammation from the disease combined with steroid side effects began to weaken them.

Her husband Aaron, who is a philosophy professor, had to take up a second job as the owner of a motorcycle repair shop in order to help alleviate the financial strains that the diagnosis has placed on the family.

Kelly spent New Years Eve in the hospital as vasculitis affecting her aorta set in. Kelly is hoping to receive an experimental stem cell treatment in order to halt the progression of her Cogan’s syndrome for good. However, the treatment will cost around $20,000. To help fund Kelly’s treatment, click here.

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