Diagnosing HS

To diagnose hidradenitis one first and foremost has to think of it.

– von der Werth (2001)

 

When I first read the words of von der Werth quoted above, I thought the author was being flippant in stating the obvious. It was pointed out to me that these are, perhaps, the most profound words about HS in the condition’s history.

As previously posted here, there is a significant delay in diagnosing HS, with patients waiting on average over 7 years from onset of symptoms to formal diagnosis. This delay can have devastating consequences for patient well-being. The frustrating part about this delay is that diagnosing the condition is simple and can be done in less than 2 mins. In 2014, Vinding and colleagues proposed a simple, two-stage questionnaire for HS which involves two questions:

  1. “Have you had an outbreak of boils during the last 6 months?” If the patient answers yes to this, then a follow-up question is asked:
  2. “Where and how many boils have you had?” and the following body locations are listed:
    • axilla
    • groin
    • genitals
    • under the breasts
    • other locations

If the patient reports two or more boils in follow-up question 2, HS can be diagnosed. This simple, rapid two-stage questionnaire has been validated and tested in hundreds of HS patients, and has been shown to be 90% sensitive and 97% specific for HS (Vinding et al., 2014). It’s beauty lay in it’s simplicity: just a couple of questions are all that are required. No expensive and time-consuming tests are needed.

I recall my own diagnosis (some 20 years after first symptoms). While telling the physician about my symptoms I noticed him scribbling on a piece of paper which he handed to me with the words “hydradenitis suppurativa” [sic] on it. He had spent some time in surgery and fortunately for me had first-hand knowledge of HS. He sent me on my way urging me to Google HS and informed me that I would probably “have a tough time of it”.

In my 30+ years of living with HS, I have met many healthcare professionals but I can count on one hand those that had first-hand knowledge and experience of HS: my plastic surgeon, my dermatologist, the GP who diagnosed me, and several nurses who have helped with wound care post-surgery. The majority of healthcare professionals I have met were unfamiliar with HS, which is unsurprising given that there are over 3000 skin conditions described in the medical literature (Lynch, 1994; Serge, 2006). HS faces a lot of competition in attracting the physician’s attention. It behoves all of us with HS to try and raise awareness among the medical profession and general public of this dreadful condition.

We can do this by talking more openly about HS with our family, friends, work colleagues (talking about HS can also be very therapeutic) and others, and also by talking about HS with those healthcare professionals who look after us. We can raise awareness by using social media to highlight HS, and the number of HS advocates doing just that is fortunately on the rise. We can write about our experiences (as many of us do using social media), and use video and other platforms to share our HS stories. We have done nothing wrong and have nothing to be ashamed of and it is time to break the silence around HS. We owe it to ourselves and to the many people who are enduring HS but have yet to be diagnosed.

 

References:

Lynch, P.J. (1994) ‘Dermatology‘ (House Office Series), Williams & Wilkins, Philadelphia, PA.

Serge, J.A. (2006) ‘Epidermal barrier formation and recovery in skin disorders,’ J Clin Invest., 116, 1150–1158, [online], available at: doi: 10.1172/JCI28521, [accessed 30 Mar 2019].

Vinding, G.R., Miller, I.M., Zarchi, K., Ibler, K.S., and Jemec, G.B.E. (2014) ‘The prevalence of inverse recurrent suppuration: a population-based study of possible hidradenitis suppurativa,’ Br J Dermatol., 170, 884–889, [online], available at: doi: 10.1111/bjd.12787, [accessed 30 Mar 2019].

von der Werth, J. (2001) ‘Hidradenitis suppurativa,’ Dermatol in Prac., 9, 2225.

 

2 thoughts on “Diagnosing HS

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