Lindsay G. has been a patient with ICI since 2003. She came to us after being diagnosed with Goldenhar Syndrome and having undergone three surgeries. With ICI, she has had close to 80 different surgeries and countless visits. After treating Lindsay for the past 13 years, she has become a dear member of the ICI family.
She kindly offered her perspective and advice for other patients and families in the subject of acceptance: “I had a pretty positive experience growing up. I come from a small town where everybody knows each other. People looked out for me,” but adds, “I’ve heard it was very different for a lot of kids.” She says that her quality of life has still improved since her continued surgeries, and offers the following advice: “It gets better. When I was younger, going through all the surgeries, it was hard to see the light. But now I’m happy and I just graduated college.” She talks about the importance of finding support groups and having a strong network of family and friends. “Keep your head up. People may look and think things, but they don’t know who you really are.”
What Is Goldenhar Syndrome?
Goldenhar syndrome, otherwise known as Oculo-Auriculo-Vertebral (OAV) syndrome, is a condition present from birth that mostly affects the development of the ears, nose, soft palate, lip, and mandible. Victims of this syndrome may also suffer from scoliosis, hearing loss, deafness or blindness unilaterally and sometimes bilaterally, and occasionally granulosa cell tumors. Goldenhar syndrome is considered quite rare, with only 1 in every 3,500 to 25,000 live births diagnosed.
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