Season 5 | Episode 2: HS Warrior Ashley Dalton on Surgery, Self-Advocacy & Community

In this powerful episode of Hidradenitis SuppuraDivas, Brin and Cyd are joined by special guest Ashley Dalton (@callmedalton2) — HS Warrior, advocate, and founder of the very first HS 5K “Move or Mingle” event.

Ashley shares her journey of living with hidradenitis suppurativa since age 13, navigating a delayed diagnosis, undergoing multiple surgeries, and learning how to advocate for herself when doctors initially dismissed her concerns.

This episode covers:

✨ The emotional impact of delayed diagnosis
 ✨ What it feels like to finally see “HS” on your medical chart
 ✨ Surgical treatment options, including secondary intention healing and CO2 laser surgery
 ✨ Recurrence, remission, and realistic expectations
 ✨ The power of community and finding your HS family
 ✨ How sharing your story helps heal you and others
 ✨ Why it’s okay to switch dermatologists
 ✨ Educating your providers when they don’t know HS

Ashley’s honesty about surgery, healing, fear, and hope reminds us that there is no single path in HS treatment — and that community changes everything.

One of the most powerful moments? The validation that comes from hearing, “You’re not crazy. You’re not alone.”

Resources & Support

Find educational tools, support groups, advocacy resources, and more at:
👉 HSConnect.org

Follow the conversation and stay connected:
📲 Instagram: @hsconnectorg
📲 Instagram: @socialcydd
📲 Special Guest: @callmedalton2

If this episode resonated with you, share it with another HS Warrior and continue amplifying patient voices. You are not alone in this. 💜

This podcast was made possible by our sponsor Moonlake, and past sponsors UCB and Sanofi.

Transcript

SPEAKER_01 0:00

We're the hydrogenitis super diva. It's not here. Hydrogenitis Super Divas.

SPEAKER_00 0:15

Welcome back to another episode of Hydra Cardinitis Super Divas. I am here with Brindley, of course, but today we are joined with a special guest, Ashley Dalton. Hello. Nice to have you here. She is also a patient living with HS, and she just put on the very first HS 5K walk, and I love that it said like move or mingle for it was very inclusive to our HS community. Um and so we appreciate that work that you're doing, and I think we really just want to know a little bit about your story.

SPEAKER_01 0:46

Yes, hello. Hello. Okay, my name is Ashley Dalton. I am a patient with HS. I've had HS since I was 13, but I didn't get diagnosed till I was 20. So it took a good amount of time, which is pretty normal though. Um normal time is about seven years. Hopefully not for long. Hopefully not for long. Um yeah, um I struggled with HS starting in my in between my breasts, and then um it kind of just went all over my body to my tailbone, my groin, um, and then under my armpits. So I've had five surgeries for HS, and I have another one coming up soon. Um yeah, I'm just trying to raise awareness for HS because it is not rare. There's one in 100 people who have this condition, so it needs to be more talked about, more known, and just more freely talked about, honestly, because um so many people have it, but they might not know they have it. So that's what I'm trying to do here.

SPEAKER_02 2:00

Yeah, it's absolutely insane how many people have HS, and then when you start talking about your HS, how many people come out and say, like, oh, I have something like that too. Yeah, or that's exactly what I have, but they have no idea that they've been like carrying around that secret for so long.

SPEAKER_01 2:17

Also, you know, people might find out that they have it, but they don't want to talk about it. And that's what happened at the event, the HS mix and mingle. This um girl came up to me and she's like, I'm so glad you put this on because I've had HS for a while. I recently recently got diagnosed, but I've never told a soul about it. Like you are the first person that I am talking to, like talking about this with, and I don't know, it just touched my heart because that could be so I mean that is so many people, and not that there is, or not that that could be the thing, but it is it is the thing. People um don't have anybody to talk to about it, or they feel embarrassed, or they don't have a community to talk to about it. So yeah, it was really special.

SPEAKER_00 3:11

That is so special when that happens, like you don't realize the what your work is doing is so meaningful. Yes. Um and so I think the way we tell our story is so powerful and the testimony in it too. So, like you said, you have had surgeries before. Um, sorry, like that's been a that's a treatment of action that's working for you. I know a lot of people have fear of surgery. I know before I met other HS warriors, I never even would have thought, I mean, I maybe thought like a skin graft because this like the skin is damaged. Um, but I never thought that like these there were other surgical options that give you a better outcome with your HS, hopefully. Yeah. Um so how has that been working for you?

SPEAKER_01 3:54

Yeah, so when I first got diagnosed in 2020, um previously before that, I did the clindamycin, the dicycline, you know, all that stuff. I did the clindamycin lotion. Um, and then when I got diagnosed, surgery was brought up. I did have surgery like on my tailbone for my palinidal cysts before getting diagnosed with HS, but it it's always come back, like that's just kind of a recurring spot, and that's you know, I have to take control of that somehow, but it always does come back, um, which sucks.

SPEAKER_02 4:31

It's a very common recurrent spot. Yeah, so even if you do have surgery for that, it's really, really hard for some reason.

SPEAKER_00 4:38

Yeah, I mean it's all three of us have a pile.

SPEAKER_01 4:41

Three surgeries deep, and it's still there, yeah, always wanting to be my friend. Um, so when I got diagnosed with HS, surgery was brought up. Um, and they they my first one I believe was in my groin, um, but in 2019 I had a breast reduction, and um, when I had my breast reduction, I had about 12 flares under my breasts, and so that took care of a lot of the flares, but I still have like really bad scarring and stuff, and within the last year I'd say they came back on one side. One side's like a little bit better, they come back like every couple months or so, but this side is constantly leaking, always covered, you know. Um, but even that short period of time, like to not be. Yes, yeah, yes, it was amazing, and I thought I was in remission and then yeah, I'm like, come on, man. And then I yeah, so I did have that in 2019, I believe it's in 2020 I had surgery in my groin, but they did a surgery that's not recommended for HS, they did um dissolvable stitches in that area, but it hasn't come back, so it's like really weird, but um, so I had that there, and then um and then in 2020, no, 2022 I had my double arm surgery, and one side is okay, it healed like pretty properly. I still get flares every once in a while, um, but this side never closed up, it never healed, and within like three months after my surgery it all came back, and um yeah, it's tunneling there now, and so that is my next surgery. I'll have um CO2 laser surgery in that area, so um, and I believe that's I don't know if you know uh the exact percent, but it's like a four percent chance of it not coming back, so that's like amazing that that's even a thing now. Um so yeah, I'm I'm excited about that, but you said a four percent chance of it.

SPEAKER_00 7:05

Yeah, there it is.

SPEAKER_02 7:06

Got a really good success rate. Yeah. Is that crazy? Yeah.

SPEAKER_00 7:11

Four percent, not 40. No, four. Just any percent is good though, right? In the right direction is what we're saying. Okay, I appreciate y'all's glass half full. No, I thought I was hearing a glitch in the big train. But no, that's why it's important to hear other people talk about like their treatment options and what they've gone through because I like I said, I would have never thought like starting it. Like, no, no, yeah, put these keep taking antibiotics or keep trying it, and it's like a vicious cycle that we all think is normal, but it's not normal until you hear somebody else had success with a biologic or surgery or yeah, you know, um a lifestyle change, and I think that's the key to our HS community, and sometimes we get so like such tunnel vision, and we're like, no, like this one thing, we need this one thing, we need a cure, we need the like, but HS is just not that way, it's not the C-word, it's like there's it's not that way. We have to find multiple treatment options, we have to find multiple ways to attack it, multiple ways to to try to like heal it, or because it could be so many different things that are triggering the HS to happen in the first place.

SPEAKER_01 8:25

I also think it's important to know that it it's okay to be scared to do these things too. Um you mentioned a skin graft. When I originally was gonna get surgery, like my double armhead surgery, they wanted to do skin graft, and I was okay with it. Morning of surgery, I went in and I said, I can't do it. I can't do a skin graft. And so they just did um, you know, they went in and dug out everything that they could. I can't remember the correct term.

SPEAKER_02 8:58

Secondary intention healing where they leave it to heal from the inside out. Yes, yeah, yes, looks scary, doesn't hurt as near when you look at somebody with second intention healing, like you look at it and you think, how are you even sitting here without like writhing on the floor in pain?

SPEAKER_01 9:15

And we're just like, Oh, we're cool, like this, yeah, yeah.

SPEAKER_00 9:19

That was brilliant.

SPEAKER_01 9:20

It's so like we're so used to it, I think, which isn't the best thing either, but I think we just get so used to seeing open wounds and like seeing the you know, like feeling the pain, like it's just second nature to us. Yeah, to be that painful.

SPEAKER_00 9:40

Well, because you guys often say that like it's it was different from like you would take that pain over like the flare pain, too. Yeah, you know what I mean?

SPEAKER_01 9:49

Like you rather be healing from the flare, from that pain, it's gonna get better.

SPEAKER_02 9:56

Yes, it's like not just a constant everyday, like, oh, there it is again, or like you have something that drains and then you're just waiting for it to come back to do the cycle all over again. Yeah, there's like an end to the cycle in sight, and so I think that also helps change your perspective on healing about like, yeah, what you're you're looking forward to this. Like, I don't know, it's weird, but I feel now like if I have to have surgery, I'm like, yes, you know, like do this! Like there's an end in sight.

SPEAKER_00 10:25

No, seriously, there's a house full of warriors here today, and three of them had deroofings yesterday, and all three of them are up and just moving like life is just another day today. And I'm like, because I'm a I'm not a whimp, but I've never had a d-roofing, I've never had surgery, so to me, I think they're fucking we all have the same conditions because I've like I've never had that, so I'm like, I would be babying myself because it would like you know what I mean? It's just a different perspective, but you don't know until you meet other people who have gone through that, and they're like, Okay, girl, I'm strong enough to do that.

SPEAKER_02 11:00

Hannah wasn't even done with hers and said, Oh, I would totally do this again.

SPEAKER_01 11:04

I was like, Okay, okay, that's so good though. Yeah, that's good, and that like having a positive mindset to going into these things is so important because the healing. I mean, I've had some really rough healing after these surgeries, but having that positive mindset and saying one day at a time and just knowing that it's gonna get better helps so much. Yes, it really does.

SPEAKER_02 11:31

And like hey guys, sorry to interrupt. I just want to talk about something that I think a lot of us in the AJS community overlook, which is clinical trials. I know, I know. When you hear clinical trial, your brain probably goes to a lab coat and a clipboard situation, but honestly, it's not like that. Being in a clinical trial is just going to the doctor's office. You're seen by a care team, you have appointments, they're checking in on you. It genuinely feels like some of the best, most attentive medical care you will ever get. And here's what a lot of people don't realize it's completely covered. You're not paying out of pocket for any of it. And many trials actually help with travel costs too. So getting there isn't on you either. For those of us who've dealt with HS and know how expensive and exhausting this condition can be, that's actually a huge deal. Beyond the personal stuff, every person who enrolls us get closer to better treatment options for everyone living with HS, and that matters because we all know how much we need more treatment options. A big thank you to Moon Lake for sponsoring today's episode and for supporting the HS community in a real and meaningful way. We'll drop a link in the show notes if you want to learn more. All right, all right, now back to it. This is a phase, and a phase means like maybe even two days. You know, like it'll change in two days. Yeah, it's kind of like having a baby. Yeah, and when they don't sleep, you're like, oh my god, this is never gonna end, and then all of a sudden it changes. It's like the same kind of thing where you're just like, this is what it is right now, and then tomorrow may look completely different. Please tomorrow look different.

SPEAKER_00 13:04

I love that, especially because I feel like to your today actually does look different from probably, you know, even you getting surgery back in 2020 and 2019. Now you have you know support systems outside of maybe just your family. She was just a part of a huge HS campaign that's bringing a lot of awareness. So, can you tell us a little bit of like how are you feeling now with your HS journey?

SPEAKER_01 13:27

Yeah, um, I think when I first got diagnosed, I mean my story was a little bit different with getting diagnosed. I saw a commercial for HS in 2017, and I went to my dermatologist and I said, I think this is something that I have, and she said, No, there's no way you have that, you do not have that. And at that time I knew I had it, but I just wanted that diagnosis, and I did my own research after she told me that I could never have that, would it still be insane in my brain? But I found my own support groups, I did all this research by myself at that time. There wasn't what it is now, there's so much more now, so much you know the right information out there now, but um I did what I could at that time, but I think finding the community even in 2020 is when I first found my first support group on Facebook. Like, I cried when I found that support group, um, because all these people had these stories that they were talking about or posting pictures of their flares, and I was like, Oh my gosh, like this is what mine looks like. Like, I'm not crazy that I'm feeling this type of way, and you know, it was just it was mind-blowing to me. Um, so I think really finding community, and then specifically HS Connect. I found an HS family that I'll always have now, and that helped so much. Um, and even finding HS Connect, it helped me bring it out like speaking online um about this condition, um, and just helping other people the best I can. So, me helping other people and feeling more comfortable talking about HS, not even online, but just face to face to people is like so healing for yourself, yes. Yes, yes.

SPEAKER_02 15:40

Why did your doctor did she ever tell you why she didn't think it could be HS?

SPEAKER_01 15:45

So I think it was because there wasn't much out there at the time. Like she told me that oh, she's heard of it, but I don't think she knew too much about it yet, but also um I only had like one or two, so okay, okay, I wasn't like stage two, right? I was like just kind of in the beginning stages. I mean, I've had it, I had it at that time for years, but it never like progressed how it how it is now. So, you know, I it's so hard not to blame her. I don't blame her, I just don't think she had the right information. There wasn't too much out at that time, but I wish I could see her now and be like, girl, I was right, yeah, yeah. Look at my skin now, like let me teach you about this. But you know, there's so many great dermatologists, so many great doctors for this condition now, which is absolutely amazing. We need that so much, and people can um you know recommend you to doctors now. At that time, there's no way I would have got recommended to a doctor at that timing.

SPEAKER_02 16:54

So if you could go back now and like knowing what you know now, if you have that same experience and running with her, what would you would you do anything differently? And if so, what would you do?

SPEAKER_01 17:08

If I went in like um like at the stage I was at. Yeah, or but you had like the knowledge that you have now, you know. I would probably say, This is what I have. I'm not asking you if you think I have this, like this is what I have. Um this is the treatments that I know that can help me, and not only would I say the knowledge that I have, but I would also say, I hope you are telling your patients about this. I hope that you are talking about not only medications but hydraware, you know, also those type of things. But I would probably say, like, this is what I have, these are the treatments that I know that are helping in the HS community. And you know, I would probably bring in like a pamphlet or something. Like, I would be like, you probably know this, you might know this, but this might help you if you show this to patients. That's awesome. Like, they might not know this, and um I would say, you know, this is something that I'm gonna have for a very, you know, long time. Hopefully, I do go into remission, but um I don't like would you be so kind as to educate yourself on this?

SPEAKER_02 18:34

Yes, let me help you find where you can get the resources, yes, yeah.

SPEAKER_01 18:38

Similarly, go to HS Connect, please. There's so many different different tabs in that in that uh um online organization, so go check it out. Yeah, yeah.

SPEAKER_02 18:51

I just would you have tried to find another derm if you knew what you knew now, like knowing that she yeah, yeah, we were talking about that on another episode about not um just like taking whatever you're given and that you like have a choice in a vote in who you see, um and really like making sure you feel comfortable with somebody.

SPEAKER_01 19:09

If I knew like what you just said, if I knew what I knew now, I would have found someone right away. But when she told me there's no way you have that, I was like, well, I guess they're all gonna tell me that, yeah, because like I feel very strongly trauma, yeah, yeah, yeah. And I don't think and I got diagnosed so weirdly too. I thought I had appendicitis, and I went to the hospital, and they were like, No, you don't have appendicitis, but we want you to follow up with the surgeon tomorrow morning. So I went in and we were going through like all my blood results, my white blood cell count was really high, and I know HS can do that, and so I said, I think I have HS, I'm not diagnosed, um, but I know that that can happen because of HS. And so he's like, Well, you're not diagnosed, but let me look at it on the spot. He said, Yes, you have um stage two, HS, and oh my god, the relief that I had. I was like, Because even when you know, like when they officially just like put the name to something, like you're like, I'm no longer the right-headed step turn on my crazy, and I was like, okay, it's finally like on my paperwork that I have this, like even that was such a milestone for me to have it on paper.

SPEAKER_02 20:41

It's a validation, yeah, truly, of like, I've been struggling with this, didn't know what it was. Now I like I have a name for it.

SPEAKER_00 20:49

Yeah, so my favorite thing about finding out that I have hydrogen I guess supertiba was typing that shit into Google. It was like, are you sure hydrogen I guess superativa is not an STD, and like that for me was the most freeing thing because I was just like deep in my hoe phase, telling me something about myself, and I was like, like, that would be a terrible thing, you know? Yeah, and thankfully it was like figuring out that that was an O was like the greatest thing ever.

SPEAKER_01 21:19

Yeah, and then you're like, Oh, I don't have to get a hold of all these things.

SPEAKER_00 21:24

Figure out which loser, you know what I mean? But so I'm really, really glad that your HS journey has taken the turn that it has, and that you're seeking the right treatment options, you have the right people in your corner. Um thank you. Um, and I'm just really proud of the new campaign that just dropped with all the awareness issues for free. So thank you. Thank you for the good work. And we appreciate you for talking on the podcast with us. We hope to have you back again soon. And thank you guys for tuning in with us. Catch you on the next one.