in 1997 my sister was diagnosed with a rare disease, recurrent respiratory papilloma. there are an estimated 20,000 active cases in the u.s. the disease is characterized by the growth of tumors in the respiratory tract caused by the human papilloma virus (HPV). although they primarily occur in the larynx on and around the vocal cords, these growths may spread downward and affect the trachea, bronchi and occasionally the lungs. it is sometimes referred to as laryngeal papillomatosis and in the past was often called juvenile laryngeal papillomatosis, because it was thought to primarily affect only children. a distinguishing aspect of this disease is the tendency for the papilloma to recur after surgical procedures to remove them. hence, the “recurrent” part of the name. the tumors or growths can be wart-like, often have a cauliflower-like appearance, and are either pedunculated (attached only by a slim stalk), or sessile (closely adhering to mucosa).
she was diagnosed during her senior year in college. friends noticed her voice was raspy. my sister, being very healthy and the star of her college soccer team, went to her local doctor who put her on steroids. this made it worse. she was misdiagnosed three times before her referral to dr. ossoff at vanderbilt hospital in nashville, tn. ossoff, who came to vanderbilt from northwestern university school of medicine, has been recognized internationally as an expert in his field, otolaryngology. ossoff has said that establishing an otolaryngology residency program in july 1987 (the 106th in the country) was one of the department’s first milestones. the residency program began with two residents each year in july 1987. there are three per year now.
he once said, “when we began our residency program the best thing going for us was the good name of VUMC, the reputation of folks on the faculty and our good and congenial relationship with other otolaryngologists in the nashville community. being 106th was certainly not satisfying, so we wanted to ascend to the top third of residency programs very quickly, and ideally into the top 10, becoming a consensus leader in the field. about three or four years ago we reached that goal.”
his office is filled with head shots thanking both he and his staff. his patients include pretty much every country music singer in the world. former presidents. and the late johnny and june carter, who were once in the waiting area with my sister. my mom asked for june’s (not johnny’s!) autograph. ossoff is a brilliant doctor and i have complete faith in him. there is no question my sister is alive because of him. although i struggle with my doctors and they often leave me frustrated and angry…ossoff gives me hope. ossoff and his staff are always trying something new. trying to find something that will work. either to prolong the surgeries or cure the disease. most recently along with the laser surgeries he began injecting cidofovor and an hpv vaccine. they seem to be working. the days of a surgery every four weeks are long gone. now, it’s on average every six months unless the threat of growth in the lungs is there, which is inoperable and leads to death. in that case, she travels to back to nashville the following week for surgery. or in the past, that same day.
somewhere along the way since my sister’s first surgery almost 10 years ago, i lost count of her surgeries. i know they total over fifty. and this friday she will have another. she’s been in and out of remission for a long time. it’s been difficult to say the least. but she is strong. and i will do my best to be strong by her side on friday.