Something quite remarkable happened recently, something that will have lasting consequences for the HS community.
A young man who has HS spoke openly about his struggles with HS on primetime television in the US. This happened on the American Idol show, which commands huge ratings in the US and around the world. The young man, Jackson Gillies, got through to the final rounds of the popular competition and could easily have chosen his slot to talk about various other aspects of his life, but instead Jackson elected to focus on his life with HS. You can watch the ~ 7 minutes clip here:
Why is this significant? One of the biggest challenges for HS patients is the delay in getting a HS diagnosis, which takes on average over 7 years (Saunte et al., 2015), and can involve seeing five different physicians over 17 separate visits. This delay can, and does for many, have profound consequences on patient well-being, and increases the burden on the patient. One of the reasons why it can take so long is down to the fact that many physicians are simply unaware of the existence of HS, and as von der Werth (2001) said:
To diagnose hidradenitis one first and foremost has to think of it.
The frustrating thing about diagnosis is that once a physician knows what to look for, making the HS diagnosis is a simple and easy procedure that can take less than 2 minutes.
Jackson’s few minutes on primetime US television has raised HS awareness among the general public and crucially, also among the medical community. This few minutes will have done more for HS awareness than the many well-intentioned, but relatively ineffective traditional print and other media campaigns undertaken in recent years.
How much of an impact did Jackson’s television appearance make? In the short-term, Google Trends reveals that online interest in HS in the US approximately doubled at the time of Jackson’s appearance on American Idol, as illustrated here:
The long-term effects of Jackson’s American Idol appearance will be revealed in time, but I strongly suspect they will be significant also. Jackson’s story will have resonated with many as yet undiagnosed HS patients and will help them go seek the medical help they need. His story will also have registered with medical professionals who may have previously been unaware of HS, but who are now are better informed.
This is not the first time this talented young musician has availed of opportunities to bring HS into the public domain. I first became aware of Jackson a few years ago when I saw a TEDx talk he gave about his life with HS. You can view his ~16 minutes inspiring talk here:
The more I read and see of this brave young man, the more impressed with him I become. For instance, for a time he was unable to walk due to his HS, so he used the time productively and learned to play the guitar, a great example of how to turn a negative into a positive. As an aside, he regularly appears in my news feed and I see that Jackson frequently uses his musical talents to do fundraising concerts for many different charities and other worthy causes.
Each of us could take a leaf out of Jackson’s book and use every opportunity that presents itself to speak, talk, write, etc. about our HS story and help raise awareness of this awful condition. We owe it to ourselves and to the many undiagnosed people enduring HS in silence.
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. and Jemec, G.B. (2015) ‘Diagnostic delay in hidradenitis suppurativa is a global problem’, British Journal of Dermatology, 173(6), 1546–1549. [online], available at: doi: 10.1111/bjd.14038.
von der Werth, J. (2001) ‘Hidradenitis suppurativa’, Dermatol in Prac., 9, 22–25.