Texas A & M College of Dentistry
Putting an End to the Desperation
Dentists play a critical role in shortening the diagnosis window for this rare autoimmune disease
by Jennifer Eure Fuentes
Becky Strong first noticed something wasn ’ t right in fall 2008 . That ’ s when the nosebleeds started , and the tiny water blisters started to crop up in her mouth . She blamed it on stress . After all , she was simultaneously planning her wedding , serving as maid of honor in a friend ’ s nuptials , and helping another friend in the wake of heart surgery .
When the water blisters surfaced again , this time during her honeymoon to Antigua in early 2009 , she figured it was because of the acidic food and umbrella drinks synonymous with the tropical locale . Then the blisters wouldn ’ t go away . Through the course of the next several months , those blisters turned to large , painful canker sores . By this point , Strong , a registered nurse , had bounced back and forth between her dentist and a GI doctor , trying prescription mouthwash with ingredients like Decadron and lidocaine . It helped , but when she stopped using it , the sores in her mouth came back with a vengeance . Come Thanksgiving , a few bites of mashed potatoes turned pink with the blood from the open sores . Meat was swallowed whole ; she avoided her electric toothbrush at all costs , and opening her mouth all the way to talk — forget it .
“ I was desperate ,” recounted Strong , outreach manager for the International Pemphigus and Pemphigoid Foundation , to an audience of students , faculty and staff during a fall 2016 presentation at Texas A & M College of Dentistry . “ The greatest time of fear and worry is when a patient hasn ’ t been diagnosed .”
One unfortunate part of it all is that Strong saw her family dentist throughout the entire ordeal . But the dentist didn ’ t recognize the disease for what it was . It took an appointment with an internal medicine physician and subsequent referrals to an oral surgeon and dermatologist to pinpoint and treat the source of her pain : pemphigus vulgaris .
Because pemphigus vulgaris manifests itself in blisters , itching , stinging , burning and severe pain , it is often confused with other conditions . This means the average patient with this disease sees five health providers and waits an agonizing 10 months before receiving a correct diagnosis . It does have one telltale feature , however : In most patients with pemphigus , lesions will first form in the mouth . The same is true of one of its counterparts , mucus membrane pemphigoid , which also can affect the eyes , the upper respiratory tract and other mucosal surfaces of the body .
Dr . Terry Rees , professor emeritus in periodontics , who established the college ’ s Stomatology Center in 1984 , invited Strong to speak at the dental school . He is quite familiar with these rare yet devastating autoimmune disorders that attack the skin and mucous membranes . His first memory of treating patients with pemphigus and pemphigoid traces back to 1968 , when he devoted the majority of an extra year of periodontics training to oral medicine .
“ The patients we see with these conditions often report that they have been unsuccessfully treated for yeast infections using antifungal medications , for viral infections using antivirals , and for bacterial infections using antibiotics ,” says Rees . “ It is also fairly easy to mistake either of these for toothpaste allergies or allergies to mouth rinses or other oral hygiene products . This , of course , is usually true quite early in the disease process .”
There ’ s one rule of thumb — an American Dental Association standard — Rees references that can shorten the arduous journey toward diagnosis . If a patient has dealt with an unexplained oral lesion for more than two weeks , either biopsy or referral to a specialist is indicated . This could include an oral medicine provider , a clinical oral pathologist or an oral surgeon . Because
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