Pemphigus and pemphigoid each affect fewer than 50,000 people in the United States, classifying these disorders as rare diseases. Because of this, these diseases are often not on the radar of healthcare professionals, who are often unaccustomed to seeing pemphigus and pemphigoid in practice.
Lack of Awareness
Due to its rarity, it is common for healthcare professionals to overlook P/P in their differential diagnosis. According to IPPF data collected in 2011, 46% of patients (n=52) who saw a dentist reported their dentist was not knowledgeable about P/P symptoms and performed no action relevant to P/P. The IPPF strives to educate healthcare professionals and students about P/P, exposing them to continuing education opportunities and patient testimonials.
Misdiagnosis
P/P patients are often misdiagnosed as having a more common illness that is seen more frequently by medical and dental professionals. Clinically, P/P can mimic other oral inflammatory conditions, such as lichen planus, candidiasis, and periodontal disease. The most common misdiagnoses of P/P are erythema multiforme, herpes simplex virus, and candida. Many oral diseases can have similar appearances. A biopsy and immunofluorescent studies are needed to achieve a correct diagnosis.
Patients often see five or more providers before receiving a correct diagnosis. Throughout this process, patients are delaying correct treatment, and many experience worsening symptoms.
Consequences of Delayed Diagnosis
Delayed diagnosis of pemphigus and pemphigoid may:
- Increase patient pain and suffering
- Delay treatment
- Increase a patient’s risk for disease progression to other sites
- Make it more difficult for a patient to achieve remission
- Heighten risk for poor treatment response
- Result in loss of productivity and reduced quality of life
- Cause uncertainty, fear, and anxiety
- Result in severe weight loss
- Increase patient healthcare expenses
To witness many of these consequences of diagnostic delays, watch Becky Strong’s emotional journey toward a pemphigus vulgaris diagnosis. This honest portrayal of a patient’s search for answers emphasizes the importance of the IPPF Biopsies Saves Lives Campaign. Unfortunately, many patients share Becky’s experience. The Campaign strives to change this so that future patients can instead describe a story of early diagnosis.