Brindley Brooks, who founded HS Connect (HSconnect.org), a patient advocacy group for those affected with hidradenitis suppurativa (HS), spoke on the need for awareness among physicians and patients on the clinical features of HS in regard to both physical and psychosocial burdens.
Physicians need to be educated on the physical and psychosocial implications of hidradenitis suppurativa (HS) and build awareness among patients to address potential misconceptions regarding the condition, said Brindley Brooks, who founded HS Connect (HSconnect.org), a patient advocacy group for those affected with the disease.
What do you want physicians to be aware of regarding HS?
I think the most important thing that doctors need to know about HS is that they need to become educated about HS if they're not. There are so many stigmas and misconceptions that surround HS that are so detrimental to a patient with HS. The first thing that people need to know about their HS, and we really need physicians to reiterate to the HS population, is that this is not their fault. It's not from something they're doing or not doing. This is an equal opportunity offender. It can impact any race, gender, sexual preference, blood type, it does not matter. It affects everyone in every country equally.
So, we are working here on trying to get more statistics. As far as the prevalence of HS overall, there's a lot of misinformation out there about HS that is being used that is not necessarily accurate. I don't think that some people understand that some of these studies that are published are from one location in the country, so obviously, it's going to be a different makeup of race and ethnicity, and all of that information when it comes from one specific location in the country. So, we're trying to work on getting an overall prevalence so that we can break some of these stigmas and barriers.
And I think the other important thing for people to know about HS or for providers to pass on to their patients is it doesn't have to do with your cleanliness, it doesn't have to do with your weight. Those things may add or become factors in your HS, but your HS is not due to those things. And also that mental health is a real burden, and the psychosocial burden that comes along with having this disease is immense.
I think it's been an overlooked portion of HS for a really long time. And we're seeing a trend in that changing, which makes me so happy. But I don't think that people really understand the impact of what it's like to live with this disease, the pain, and really the shame that comes along with it.
People with rheumatoid arthritis don't live in shame that they have rheumatoid arthritis. Yet, people with HS are super hesitant to talk to other people with HS about it. And it has nothing to do with us. We didn't cause this condition, just like people with cancer didn't cause their condition or [people with] rheumatoid arthritis didn't cause their condition. So, we're really working on trying to change that shame and make it so that people with HS can not carry that as an additional burden with this disease.