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Misdiagnosis: More Reason for Increased Advocacy & Awareness

Because pemphigus and pemphigoid are such rare diseases, one of the biggest problems in achieveing successful treatment is misdiagnosis. Misdiagnosis is considered to be the most common cause of patient safety issues. Delays in treatment and malpractice suits are noted to be the main outcome of misdiagnosis. (HealthGrades of Patient Safety Incidents (PSIs);, 2007).

Misdiagnosis of P/P patients

In 1999, the IPPF sponsored a survey including questions about diagnosis experiences. We discovered that for PV only 2.5% of patients credited general practitioners with a correct diagnosis; 41% of dermatologists correctly diagnosed pemphigus patients; and dentists and oral pathologists accurately spotted nearly 18% of patients.

In 2008 we held another informal survey asking patients:

  • how long did it take for them to get a final diagnosis after they went to their first doctor upon symptoms and,
  • how many doctors did they have to visit before they received an accurate final diagnosis.

What did we find out.

  • It took an average of 6 months to get an accurate diagnosis, ranging from 1 month to 18 months.
  • It also took an average of visits to 6 different doctors before diagnosis and effective treatments were begun. The best was two doctors, the worst, a shocking 12!

Many front line physicians (dermatologists as well as other disciplines) have never, in their whole lifetime of practice, seen a patient with pemphigus or pemphigoid. Because of their reliance on their common knowledge, doctors will diagnosis nerves, gingivitis, herpes, scabies, and other skin diseases first. Then they try common blood tests and antibiotics.

P/P is often the last disease considered. Unfortunately a delay in diagnosis of these diseases can result in severe outcomes for the patient. {quotes}Often patients wait weeks, sometimes months before they can get an appointment to see a doctor{/quotes} (see the article from the NYTimes on the preference given by dermatologists to cosmetic clients, linked on our website at Molly’s blog: Pemphigus can be a very painful disease, and if untreated, subject to severe infections. The itching of pemphigoid can be devastating, especially in older patients with impaired mental faculties. It is not unheard of for a patient to end up in the emergency room because of a delayed or missed diagnosis.

So what can we do about it

  • The IPPF works to keep doctors (and dentists who are the first-line support for almost 85% of pemphigus cases) informed on what symptoms to look for when they see an uncertain presentation.
  • We put patients who are struggling to get help in touch with the leading experts in the P/P field. Look at our website,, under Community, Referral Doctors.
  • We can even help patients get appointments in a timely manner because of our good relationships with our referral doctors.
  • We have a website specifically for medical professionals where a doctor can post questions and get answers from our Medical Advisory Board experts.
  • We supply patients, through our HMP, sets of questions and informational materials to give to doctors unfamiliar with the disease.
  • We sponsor educational presentations and materials at the American Academy of Dermatology’s (AAD) Annual Convention, the Yankee Dental Congress and many other educational forums for medical, dental and nursing professionals.
  • We work to get information out to the public, having patients appear on television, radio, and in newspapers.


Let us know if you are willing to speak at local dermatology or dental meetings, many groups have monthly meetings similar to Rotary meetings. You can also call us and we can send you pamphlets to bring to doctors offices to help people get in touch with the IPPF.

We would love to get information to those in the dark. Send us the name of one of the doctors who failed to diagnose you and we will put them on our mailing list to receive a complementary copy of our newsletter! Even old docs can learn new tricks. You too, can make a difference for others!

Although we still have a long way to go before patients get the best diagnosis in the correct amount of time, we have made progress. The IPPF has been pushing the envelope and we are working to make sure that there will come a time when it will not take 6 months of frustration, pain and fear before an adequate diagnosis is determined.

Napisano w Issue 54 - Fall 2008


The P/P Registry has been approved by the Western Institutional Review Board (WIRB) and is actively enrolling participants.