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    Hidradenitis suppurativa misunderstood and underdiagnosed

    Misconceptions about hidradenitis suppurativa (HS) prevent dermatologists and other clinicians from properly diagnosing and treating what one expert says is a “crippling disease.”

    One of the misunderstandings about HS is that it’s rare, according to Gregor Jemec, M.D., D.M.Sc., professor and chair of dermatology at Roskilde Hospital, Health Sciences Faculty, University of Copenhagen, Denmark, who chaired a section on hidradenitis suppurativa at the 2015 World Congress of Dermatology in Vancouver, Canada. 

    “U.S. registry studies suggest [it is rare], while European population studies suggest it is not,” Dr. Jemec says. “It is like looking in hospital records for how many people suffer from the common cold in November. You are not likely to get the impression that it is particularly common.”

    READ: Hidradenitis suppurativa therapy options progressing

    HS prevalence in the Europe, including mild cases, is reported to be between 1 and 2 percent, according to Dr. Jemec. And most HS patients are young adults. 

    Iben Marie Miller, M.D., Ph.D.The true prevalence of HS is challenging to estimate because the disease is misunderstood and underdiagnosed, according to Iben Marie Miller, M.D., Ph.D., a post doctorial scientist in the department of dermatology, Roskilde Hospital, Denmark. Dr. Miller, who presented on HS comorbidity and epidemiology at the World Congress, says HS prevalence varies from 0.5 percent to 4.1 percent, worldwide.

    “Actually, Karl Marx was believed to have [had] HS but was also misdiagnosed when alive,” Dr. Miller says.

    Among the other important misconceptions among doctors about HS are that it is a malodorous, or foul-smelling, disease with very few therapeutic options, according to Professor Errol Prens, M.D., Ph.D., who presented on immunological mechanisms underlying hidradenitis suppurativa at the World Congress. Dr. Prens, a dermatologist-immunologist at Erasmus University Medical Center of Rotterdam, The Netherlands, says it’s also a myth that these patients often become resistant to therapy.

    NEXT: The science

    Lisette Hilton
    Lisette Hilton is president of Words Come Alive, based in Boca Raton, Florida.


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