Hidradenitis suppurativa (HS) Learning Zone
Transcript: HS diagnosis experience
Dr Steve Daveluy and Cindy Stillman
Interview recorded Sep 2024. All transcripts are created from interview footage and directly reflect the content of the interview at the time. The content is that of the speaker and is not adjusted by Medthority.
- It takes a long time to get an appropriate diagnosis. And it's really frustrating as a patient when you've seen, for myself personally, I've seen four different dermatologists over a span of about 15 to 20 years before I actually got diagnosed with HS. And on top of that, there's just, there's so many appointments, and it's really disheartening when you know, I keep growing these cysts or boils over and over and nobody knows what it is. From the start of the disease until you get the diagnosis, you're really looking at a lot of time and pain and oils and cysts and tracks and tunnels and wounds, and it becomes very frustrating. I can tell you that when I met my dermatologist, and the dermatologist I see now, who is an expert with HS, and he finally said, "I think I might know what you have. Can you review this information and tell me what you think?" And I finally found someone that knew. It was such a relief, and I was so excited to go home and tell my family because I have family members that have the same disease.
- Yeah, and I try to tell that to other healthcare providers, too, is to remember that most patients have had this rough journey, so by the time they're getting into your office, sometimes they're a little discouraged. They're a little jaded with the healthcare system because, understandably, it has failed them again and again. And so I say, you know, have a little bit of extra grace with your HS patients because sometimes they're coming into the appointment and they need some hope because it's been sort of a hopeless experience so far. I think it's really important to go to these conferences or interact with the content to learn, like this is really the best places where the people who are doing HS research and who are sort of creating these new treatments and ways to do things, share their information. So I think this is a really great way to learn and to bring it home to your patients because it's sort of the conference material is where that information is. Your patients need that information, and they need you to have it. So really coming and taking advantage of conferences to learn, and sometimes you can even, depending on the conference, there's even the opportunity to sort of ask your questions, you know, ask about your tough patients. Or sometimes through the conferences, you make connections with an HS expert who can help you.
Sometimes it's even good just to know you're not the only one who's having these struggles. You know, as a clinician, you're sitting in the crowd and someone else asks a question or the speaker says, "Yeah, this is a challenge." And you go, "Oh good, I'm not the only one who is struggling with that for my patients." So I think this is, it's really the best way to sort of get the information that you need. And I'm so happy that conferences and online resources are including so much more HS content. Like you mentioned, it's great when you can find information that's reliable from a good source online. It's really great for us clinicians, too, that there's more information out there. HS is on the agenda a lot more for these conferences than it was, say, 10 years ago. There's more talks, there's more people exploring different topics in HS. Now there's surgical talks, medical talks, all kinds of talks about it and all kinds of good stuff going on 'cause that just helps us to really advance the field and to bring much needed attention to the topic.
This content has been developed independently by Medthority who previously received educational funding from Novartis Pharma AG in order to help provide its healthcare professional members with access to the highest quality medical and scientific information, education and associated relevant content.