About 1 year ago, I was involved in a HS awareness campaign, with the good people at The Irish Skin Foundation. The campaign was called #five17eight, reflecting the fact that for the average person with HS, it takes:
- Five different doctors,
- Seen over 17 separate visits,
- Eight years
to diagnose the condition. These are shocking numbers and are worth thinking about for just a moment.
In my own case, it took ~ 20 years before I finally heard a doctor mention “hidradenitis suppurativa” to me. When I did receive the diagnosis, there was relief that there was a name for what I had been going through: I now knew that I wasn’t a freak and that there were others living with the condition. This meant a lot as for most of that ~20 years I felt alone in dealing with it. I also felt relief that I now had something to work on and research. I wanted to know if there was anything I could do to improve my situation. I had never accepted what I had been told for years i.e., it was just “one of those things” and there was not much to be done about it. In another sense, I felt let down by the medical profession as during that time I had seen many healthcare professionals and specialists. How could they have missed it or not known what was going on with me?
I got involved in the #five17eight campaign as I feel it is important to raise awareness of HS, among both the general public and in the medical profession. Many people have this condition (up to ~1% of the population may have HS), and of these, many are living with in silence due to embarrassment (as it can affect the intimate areas). I think that by speaking out about it, others may be able to get the treatment and support that they need. It is also important to increase awareness among the medical profession as new and improved treatments are becoming available all the time. Some of these treatment are making huge improvements to peoples’ lives.
If you have HS consider speaking openly about it with friends, family and so on. It is not your fault you have it and about one in three of us with HS will also have a family member living with it. Breaking the taboo surrounding HS is the first step in increasing awareness.
How long between the onset of symptoms and diagnosis for you?