Living With Hidradenitis Suppurativa Wounds

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Brian McCurdy:
Welcome back to Today's Wound Clinic podcasts, where we bring you the latest practical treatment and reimbursement information from leaders in the wound care field. I'm Brian McCurdy, the managing editor of TWC. As part of our series on the patient experience, Suzanne Moloney is sharing her experience as a patient with hidradenitis suppurativa. Welcome. Why don't you briefly introduce yourself to the audience?

Suzanne Moloney:
Thanks for having me here, Brian. My name's Suzanne Moloney. I'm the founder and CEO of a company called HidraMed Solutions, and we focus on wound care products specifically for patients with hidradenitis suppurativa, or HS for short, of which I am one. And my story is a very unusual one, but I think it would be of interest to your listeners because I suppose it starts when I was 13 years old and started to develop symptoms of HS, which I didn't know what they were and just thought that they were kind of boils or abscesses forming in my groin. And for years, I hid them from my mother and my family, and I was very embarrassed and ashamed of them, and I tried to just manage it myself at home, but eventually it got too severe and I needed to see a doctor. So I was brought to the doctor when I was 17 and was still not diagnosed actually, but was put through several kind of different therapeutic treatments and also surgical treatments over the years until I was 23.

And a colorectal surgeon who'd actually done several surgeons on me at that point was just baffled at my symptoms. And he did some digging and recognized that this is hidradenitis suppurativa and that he wasn't going to be able to treat me wholly. He needed to send me to a dermatologist or a specialist in HS. And so then I suppose I got into a new treatment pathway and happily now I'm fairly well controlled. The disease is not as severe as it was, but I think the story is that I suppose I've struggled with this disease for the majority of my life, and the biggest challenge for me, even though I've had lots of different treatments and doctor's visits and surgeries, is the day-to-day management of the exudate and drainage that comes from these lesions because they're located in very, I suppose, delicate areas of the body, such as your groin, your buttocks, under the arms in between the breasts or under the breasts areas that are really difficult to keep addressing in place. So it's kind of a huge challenge for patients. And I suppose something that might be of interest to your audience today.

Brian McCurdy:
So can you tell us about some of the positive experiences you had as a patient?

Suzanne Moloney:
Yeah, absolutely. I think one thing that I recall over the years is I suppose the eagerness for people to help. Once I had started talking about it and people wanting to learn more about the disease and to understand actually what I was experiencing because it's not just, I suppose, a lesion on your skin. There's a whole other set of comorbidities that come along with this disease. For me, it's a lot of brain fog and fatigue, but for other patients, there's issues with their digestive, their digestive system. A lot of patients have Crohn's or ulcerative colitis, a lot of cardiac issues in HS patients, diabetes, lots of really serious other comorbidities that can have a huge impact on your quality of life. And HS already has quite a severe impact on your quality of life. So I think once I started speaking about it, definitely in particular, some of the doctors, my primary care doctor was a lot more, I suppose, empathetic towards my condition and towards me and wanted to help me as much as he could.

And the nurses that always helped me and the nurses that I would've dealt with over the years as well were incredibly friendly and always tried to help me as much as they can. I've also met an amazing network of patients, and I suppose because the disease, like lots of chronic illness is very consuming, it's all consuming often for some people, and you need to be able to vent about it or talk to people about it who are outside your circle, your social circle. And so there's huge communities of patients have formed online, and I've definitely met some really good friends through these communities online and patient associations as well.

Brian McCurdy:
Now on the other side, have you had any negative experiences as a wound care patient?

Suzanne Moloney:
Yeah, so there's a couple of things that spring to mind, and not necessarily negative, but something that I wish was different now in hindsight. And I think the most standout experience was post-surgically when I was attending wound clinic, or actually, actually after my first surgery, there was a community nurse coming to my, it was such a big surgery, it was very morbid surgery, and I had a daily visit from a nurse for two weeks and then every two days for the next two weeks and so on, we reduced the visits as the wound started to heal, but it took eight weeks. And then after my next surgery, I was attending a clinic, so it was a different setup, but I was attending a clinic daily, and I've had about five or six surgeries that required daily wound care from a community nurse. And the other surgeries I've had I've been able to manage at home.

One of the things that stands out is that none of the nurses who were treating me knew what HS was, and it's so easy to diagnose. It's essentially if you have recurring abscesses or boil-like lesions in any of these areas, like the armpit, buttocks, groin, inner thigh, and they've happened more than once in the last six months. It's very often. And I think if those nurses had have known, in particular, the nurse who was helping me after my first surgery had have known what I had, I would've been diagnosed almost five years sooner than I was. And I think there would've been a window of opportunity there to get me onto a biologic treatment that would've reduced my symptoms sooner and potentially would've prevented it from progressing to being so bad as it is or was. I think that's my, and it's not even a negative experience.

It's no one's fault. It's not, or hasn't been a lot on the curriculum and there's not a lot of awareness about this disease. And I suppose that's why I'm delighted to be here to talk about it because I think the primary care nurses or postsurgical wound care nurses or anyone working in wound care who recognizes this pattern in their patients could potentially provide a diagnosis and get them into a treatment pathway that will really help them. My other negative experiences of HS and wound care don't relate to any clinicians specifically, but to the products, because I've always found off-the-shelf wound dressings incredibly difficult to keep in place in my armpit and in my groin. I would have extreme kind of rashes and skin tearing with the amount of adhesive that I was using, a lot of pain, a lot of just to stress.

I started to not want to go out because I just didn't want to start bandaging myself up sometimes. And I'd become at certain times, not all the time, but quite withdrawn and wanting to just stay out, removing myself from certain social situations. I actually had an experience when I was at my friend's hand party and the dressing I had in my armpit fell onto the floor. I was meeting her mother-in-law and I extended my hand to shake her hand, and the dressing fell out of my armpit down out of my top and onto the floor. And that experience isn't unique to me. Patients with HS often describe leaks and odor and dressings falling off and moving and might seem like a small thing for people outside of the condition, but when you're living it, you have this anxiety in the back of your mind all the time.

You're constantly thinking about it. Is that dressing moving? Is it going to fall off? Can people smell me? Have I stained this seat that I'm sitting on? And it's really difficult to live your life to the full when you're constantly worried about things like that. And patients with HS, often it's a thing a lot of them have us having in common is that we do become withdrawn. A lot of people leave their jobs or can't keep a job because they're absent from work so much. A lot of people drop out of college. There's higher rates of mental illness in the HS patient population. And from my perspective of living with it for my whole life, I just wanted to have something that would enable me to actually live my life and go out and go to work, go to college, go on a date, go shopping, and it's really difficult when you have products that are just not really fit for purpose in these mobile kind of moist, hairy, warm areas of the body.

Brian McCurdy:
What do you wish doctors understood about HS?

Suzanne Moloney:
I wish they would understand the impact to patients, and I think they do, and I think people understand that disease to live with, but the really truly experience can be really difficult. From my own experience, I would see my doctor who manages my disease once every six months for a checkup, but in that six months period, in between my doctor's visits, I'm kind of on my own and I'm left to manage it to my own devices often without any kind of guidance on how to manage the odor, wound hygiene, should I be exercising? Is there any diet recommendations? And I'm reasonably fit and healthy apart from this disease. I'm not overweight. I don't smoke. I don't really get sick that often, apart from covid that I had last week, but I don't really tend to get sick, and I think a lot of the ways I've learned to cope with this disease have been by myself, and maybe some of them haven't been the most healthiest ways.

So I think a little bit more support and maybe a multidisciplinary approach to the complete management and holistic management. Obviously, wound care plays a huge role, so advice on wound care. So yeah, I think a lot of the doctors who are treating HS and are aware of this disease and how to manage it are doing a great job, and there's lots of research and new treatments becoming available, so that's fantastic. For the doctors who aren't familiar with HS, I would implore them to do a bit of reading on it and to learn how to recognize the science because it's so easy to recognize once you are aware of it, and there's so many opportunity for healthcare practitioners in all areas to recognize it. Say in ob/gyn, it could be the case of asking a patient about the scars and their inner thighs.

Were those scars caused by a recurring boil, like abscess or lesion? Is there tunneling underneath the skin? Is there an opportunity to ask questions during a breast exam? Did that patient have unusual markings in their armpits or around their breast? It could be HS. There's lots of touch points with patients where you might not be thinking about HS, but you might see scarring or an axis or lesions, and all you have to do is ask the question and it might lead to a diagnosis. I definitely think exudate management is incredibly important. Products that don't require adhesives to be used on the skin are great. Adhesives in those areas are really, they're just difficult to keep in place because you have something taped on, and as soon as you move, it's peeling away or it's pulling off, and then you get all of these rashes. I think just kind of compassion and care and understanding, which I know the majority of healthcare practitioners have buckets of, and I'm so grateful for that. But yeah, no, it's more than, I suppose, a wound. It's more than a wound condition. It's more than an abscess. There's a huge impact to the patient's quality of life, and it's just to understand that while you are treating the patient.

Brian McCurdy:
Well, thank you so much for sharing your thoughts and experience with HS with the audience. For more podcast episodes, be sure to check out Today's Wound Clinic, SoundCloud, or your favorite podcast platforms.