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Before the use of topical steroids, the mortality rate from pemphigus was 85%; the lesions would go untreated, and patients would die from secondary infections.
“The outside topical treatments, the steroid creams, heal the skin from the outside, but the only way to turn off [disease progression] is to stop the autoimmune system from attacking itself,” Zrnchik said.
During her flare-ups, Oling applies clobetasol, a topical steroid. Sometimes she also takes dexamethasone, a strong steroid that is injected into the periphery of the sore and suppresses the immune response.
Of the many mysteries surrounding the disease, one is the high female-to-male ratio of those affected. Of 800 patients in the IPPF registry, 73% are female. Research is being conducted to try to determine what role a patient’s gender plays.
Another issue is the emotional impact on patients. If you have the disease externally, attacking your skin, “you’ve got prejudice and care issues,” Oling said. “If you have it internally, people don’t see you’re sick, so they don’t understand what you’re complaining about.”
Now a board member at the IPPF, Oling has met a patient who had to cover her face and travel with a doctor’s note that told airlines she was not contagious. Others are so burdened with the disease’s financial toll that they have to choose between food and bandages.
“The disease causes a lot of isolation and a lot of stress,” Oling said. “Autoimmune diseases are worsened by stress.” With 70%–80% of instances involving the mouth first, the IPPF is launching an awareness campaign to educate the dental community on early detection. “It takes about five physicians an average of 10 months to diagnose the disease, and dentists are in there pretty early,” Zrnchik said. “If we can have dentists to diagnose it sooner, we can cut the 10 months out.”
The IPPF will target the schools that graduate the most dentists, and send patients and experts to speak to dental students to increase awareness.
Contact Maia Efrem at email@example.com
In order to learn more, get support or support the IPPF in its mission, visit www.pemphigus.org