I recently posted about the #five17eight online campaign run in 2017 by The Irish Skin Foundation to highlight the diagnostic delay that those with HS typically experience. This delayed diagnosis data came from an international study carried out a few years ago by Saunte et al (2015), who reported that those with HS typically take ~2.3 years from initial symptoms to seek medical help from a healthcare professional. This study also found that, on average, it takes over 7 years from initial symptoms to formal HS diagnosis.
Despite increased recent research interest in HS, more awareness campaigns (such as #five17eight), and a growth in online interest in HS (Hessam et al 2017), long delays in diagnosis remain an issue today. A recent report by Loget et al (2018) describes a nationwide study in France involving over 300 HS patients from 16 locations. Before formal diagnosis, some 170 (54%), 114 (37%), and 45 (15%) of patients had seen between 3, 5, and 10 general physicians, respectively, for their symptoms. The average time between the initial clinical signs of HS, the first dermatology visit and the formal diagnosis was 6.2 and 8.4 years, respectively.
These are shocking figures considering HS is widely recognized as being simple to diagnose once the physician knows what to look for (Zouboulis et al 2015). It is also sobering that such figures can emerge today from a country like France, with a widely respected and well-regarded health system.
In my own case, I first developed symptoms as a ~13-year old and being shy and self-conscious about my body, I tried to hide the condition for as long as possible. My mother eventually discovered some blood-stained underwear in the laundry basket and we had a chat about it. I dread to think what must have crossed her mind at the time. She persuaded me to go visit the family doctor and get it checked out. As HS is not widely known about in the medical profession, it was another ~15 years, several misdiagnoses and a few different doctors later before I first heard the term “hidradenitis suppurativa”. I know I am not unique in waiting such a long time for a formal diagnosis of HS.
I think the onus is on those of us with HS to speak up about living with the condition. Keeping it to ourselves, and therefore hidden, serves no useful purpose. We owe it ourselves and to the many others out there who have yet to be diagnosed.
Did you wait for a while before seeking professional help?
Was there a long delay between initial symptoms, your first visit to a physician, and formal diagnosis?
Hessam, S.D., Salem, J., Becharam F.G., Haferkamp, A., Heidenreich, Paffenholz, P., Sand, M., Tsaur, I. & Borgmann, H. (2017) ‘ Hidradenitis suppurativa gains increasing interest on World Wide Web: a source for patient information?’ International Journal of Dermatology, 56(7), 726–732.
Loget, J., Saint-Martin, C., Guillem, P., Kanagaratnam, L., Becheral, P.A., Nassif, A., Fougerousse, A.C, Siham, M., Girard, C., Barthelemy, H, Chaby G., Gabison, G., Perrot J.L., Pallure, V., Beneton, N., Boye, T., Jacobzone, C., Begon, E., Bernard, P. & Reguiai, Z. (2018) ‘Misdiagnosis of hidradenitis suppurativa continues to be a major issue. The R-ENS Verneuil study’, Annals de Dermatologie et de Venereologie [online], available at: doi: 10.1016/j.annder.2018.01.043 [accessed 11 May 2018].
Saunte, D.M., Boer, J., Stratigos, A., Szepietowski, J.C., Hamzavi, I., Kim, K.H., Zarchi, K., Antoniou, C., Matusiak, L., Lim, H.W., Williams, M., Kwon, H.H., Gurer, M.A., Mammadova, F., Kaminsky, A, Prens, E., van der Zee, H.H., Bettoli, V., Zauli, S., Hafner, J., Lauchli, S., Frnech, L.E., Riad, H., El-Domyati, M., Abdel-Wahab H., Kirby, B., Kelly, G., Calderon, P., del MArmol, V., Benhadou, F., Reviz, J., Zouboulis, C.C., Karagiannidis, I, Sartorius, K., Hagstromer, L., McMeniman, E., Ong, N., Dolenc-Vojic, M., Mokos, Z.B., Borradori, L., Hunger, R.E., Sladden, C., Scheinfeld, N., Moffah, N., Emtemstam, L., Lapins, J., Doss, N., Kurokawwa, I. & Jemec, G.B. (2015) ‘ Diagnostic delay in hidradenitis suppurativa is a global problem’, British Journal of Dermatology, 173(6), 1546–1549.
Zouboulis, C.C., Desai, N., Emtestam, L., Hunger, R.E., Ionnaides, I., Juhasz, I., Lapins, J., Matusiak, L, Prens, E.P., Revuz, J., Schneider-Burrus, S., Szepietowski, J.C., van der Zee, H.H. & Jemec, G.B.E. (2015) ‘European S1 guideline for the treatment of hidradenitis suppurativa/acne inversa ‘, Journal of the European Academy of Dermatology and Venereology, 29, 619–644.