Navigating Hidradenitis: a Journey of Hope and Resilience

[00:00:00] Speaker A: It was hurting so much to sit down. I'm like, this is not normal. I mean, this is something else. Because it hurts so much. It was even hurting while I was laying down. It was that bad. It wasn't just sitting, but laying down. It would hurt as well. And that's when you started treating it the first time. And I felt relief. Like in 24 hours, I felt so much relief. The pressure, the pain, everything helped with the injections I've been getting with you in the office. [00:00:28] Speaker B: Welcome to Skindree. I'm Dr. Ana Chacon. And today we have a very special special guest joining us. Get ready for some expert insights you won't want to miss. Today we have our guest, Janet Vera. And she is an awesome patient and individual that I have known now for. How long has it been? [00:00:50] Speaker A: We started March, but the treatment we started on May. [00:00:54] Speaker B: Okay. So we actually met March 2024. Right, March 24. Do you want to talk a little bit? Well, first let's talk about how we met and then I'll help you talk a little bit about yourself and things like that. Yeah. Where you grew up and all that. [00:01:10] Speaker A: I had stopped working, unfortunately, because of my condition. It was so painful. So I lost my insurance. So I started to search up my other options that wouldn't be so expensive. That's where I found sesame. And I kept googling and searching for the best option for dermatologists. And you were the top best on there. I was like, oh, and most loyal patients. And there were so many good reviews. So that's why I went out and I chose that one. And my first impression on my first appointment was fantastic. Fantastic. The feeling I. I felt from you, it was phenomenal. [00:01:48] Speaker B: Yeah, it's. It's almost going to make me cry because you've been such a great patient and you know, you really impressed me as a patient and that we've been through this journey together and this fulfills me and gets me up every morning and gets me excited to work. Talk a little bit about, you know, your background, where you grew up, your parents, family, and of course, what you know, I'm sure the audience would like to know as well as me is does anyone in your family have this too? Were there any signs of this potentially thing to you? [00:02:22] Speaker A: Yes, my dad had it. My parents are Hispanic, My dad was Cuban and my mom was Venezuelan. Unfortunately, both of them are not with me anymore. But my dad did. I did see these when he was younger, I remember. And I don't recall him being treaty treated for them like he would go to his primary care and they would take care of it. My mom would take care of it. But I never heard hs. I never heard, you know, hygienitis. Super T. I didn't know what that was, but I do recall seeing it on my dad. I was born in Miami. My parents got divorced so we left to Venezuela. I left with my mom. That's where I met my husband. He's Venezuelan. I have two kids, I have a daughter and I have a son. So far, my kids, I haven't seen anything. Just regular acne. I've been on that just to see if there's any big breakup. My son is an adult now. He's 22. So I'm always watching, you know, so far, teenager, he was good. Just regular acne. My background, like I said I was. When I was a teenager, I was part of my life in Venezuela. Finished school over there and then came back to the state here in the state, it's where I actually developed. And that wasn't back in 2021. I don't know what was the trigger for it. But yeah, that's when I started getting the really big ones. And the first one was on my left arm. And since then, nonstop of them coming out, big flare ups. [00:03:45] Speaker B: And how many years would you say you had this? It sounds like you've, you know, you dealt with it in Venezuela for the big ones. [00:03:53] Speaker A: I think 2021 acne. Like every now and then I would get a big cyst, but it wasn't nothing like compared to when I got the first one in my arm. Like there were big cysts in my face, maybe one in my back, but nothing ever this bad that it wouldn't stop draining. So that big one started 2021. But I would say since my teenager years when I had my daughter was really bad acne. Like I really had big cysts in my face during my pregnancy. That was back in 2009. So it was the first signs of getting like really big cysts during her pregnancy. And after that I've been getting like really bad acne. That was the first time that you started treating me for the face. And then we continue with the Accutane for the body. [00:04:37] Speaker B: When did. Would you say that it got so big that it interfered with your life, like your work? I'm sure you know, you're married. I'm. I'm not. But can imagine this being a little bit difficult from a romantic relationship perspective or even as a mom. You have a daughter. [00:04:56] Speaker A: Yes. [00:04:57] Speaker B: And you have to be Healthy enough to care for her. When do you think that this got so bad that, you know, it made those things hard? [00:05:06] Speaker A: I would say by the end of 2022. That's when I was making the decision to leave my job. It was getting bad to the point that it was hard to get up and be at my job. That most of it, I would say 80% of the time I'm sitting down, it was just getting bad. I was like, I can't. And then at the end of 2023 was when I started to get back. Because it was two years dealing with it on and off since 2021. In 2023, at the end of it, that's when I started getting the really painful ones. And I decided on January of 2024. I'm like, I can't work no more. I just can't. It was hard to get out of bed. It was very painful and they were really draining. So I think that was the most painful part of it because they weren't draining. There was just these huge boils everywhere. And that's when I decided to quit. I was like, I can't. And then it just continued. I was about two months in bed. Cause I couldn't really get out. It was so painful. I couldn't shower. I would cry to shower. It was. It was awful. It was. I felt bad for everyone around me because they would see me like that and they would always see me as a strong woman. So I was like, no. I kept telling my husband, don't let my kids in. Especially my daughter that's only 14. She's always seen mom so strong. But I think it was good for both of us to see me that I'm vulnerable. It actually has helped her because she's a teenager. She's had a little bit of rough time adapting to her new school. But I guess seeing mom so vulnerable has helped us both. But yeah, I would say the roughest time was that by the end of 2023. 2024. The beginning before I started seeing you has been the most rough. And then after we started, I did have a few flare ups. But I know that's part of the beginning, that it brings everything out, but it wasn't as bad as. As that transitioning from 23 to 24. [00:06:49] Speaker B: Talk a little bit about had you been to other doctors, had you to get help from other dermatologists and or general doctors and what was that like? [00:07:01] Speaker A: So on 2021, when I started with the first one that was underneath my arm that it hurt. It to move just my arm, and it was my right arm. And that's my. That's the arm I do with everything. I went to a primary care provider, and she's like, yes, I know what this is. She had a family member that had the same condition. She's like, it's okay. We're going to start you on some treatment, on some antibiotics. That's. That was really rough on me. My stomach was really bad. I would get nauseous. Sometimes I would get dizzy. With medication, she changed me, like, to six different antibiotics. They did help me. It did help clear out. They were controlled for a little bit, but once I stopped, it would, like, flare up everything, completely everything. I was like, oh, this is not good. So she sent me to a specialist, a dermatologist, and I just didn't like her. And I was like, I didn't feel comfortable with her. And I'm like, this is not. This is not going to work. And after that, I didn't go to any other dermatologist because I got so busy with life. And I was like, I'm doing okay with the antibiotics. I'll just keep holding off. And that. I don't think it was the best idea. I think I should have kept continue looking for another dermatologist, but probably I wouldn't have found you. So there's that little side of me. I'm like, you know what? I think I. I'm. I'm one of those people that I think everything comes at the right time. So I'm happy I found you in that journey of so many things happening in my life in that moment. But, yeah, my primary care, she. She tried her best. She did help me. She did help me a lot because I was able to continue working from that moment. I worked for over a little over a year after it was diagnosed. So I think it was helpful. It just wasn't the right treatment for me. [00:08:49] Speaker B: And when you say you didn't like, you know, because I always want to know what patients don't like about doctors. You know when they say, oh, I didn't like that doctor. What were the qualities or things that you saw that you just didn't like? [00:09:02] Speaker A: Basically, I felt like she was in enough thorough asking me questions. I went to her office. She didn't really check me. I was like, I just didn't have the right feeling. I'm like, what? You know, just. She's like, she just looked at my face, you know, she didn't look at everything. Like, it hurts here. She's like, no, no, it's okay. You can come on the next appointment. I'm like, I'm not doing the next appointment. The first appointment, I think, is the most important, you know, to get to know your patient and know what's going on. [00:09:28] Speaker B: Great. [00:09:29] Speaker A: I can tell you, oh, I was diagnosed with this, but you need to make sure as a specialist to know what is the diagnosed. If the one that they gave me was the correct one. So I. It was just off in all the ways. I was like, no, no. And I told my husband, no. She did mention me, Accutane, and I did research it at that moment. And I'm like, it's not a bad medicine. I just didn't have the right feeling with her. I was like, this is not the right doctor for me. [00:09:54] Speaker B: Well, thank you for sharing that. And then tell me a little bit about. So the antibiotics, did they really help or it just. How did you feel about that? [00:10:04] Speaker A: It calmed it down. It did help at the moment, but, like, she would do like rounds of three, four months. And then I stopped like two months because then she would do labs again because she was giving me some strong antibiotics. She would give me three at a time. And I'm like, this is hard on me. I felt it was being really hard on and everything. I was like, this is too much. And everything kept back, coming back. Okay. So she kept going with the treatment, but when I would stop, I would flare up, and it was so painful. I'm like, this is not really helping me. You know, I needed something to stop and keep me like that. So like I said at the moment, it did help, but it was not effective. I would say it wouldn't continue feeling. Making me feel better. [00:10:46] Speaker B: You know, there are different types of hydradinitis and different degrees. You know, you could have mild, moderate, severe. One of the reasons, even though, you know, it's. It's not easy to get on it, it requires monthly appointments that I liked Accutane for. For certain types of hydradinitis. Not all types. Is the types that are very. What we call superior in medicine or kind of what, you know, the types that are draining. That drain, you know. So Accutane, I find is great because it's so drying out that it really helps those types of acne, Hidradenitis. What were your thoughts, you know, about Accutane and initially going on it, and then yesterday, you know, as we saw, you could have some side effects that are just annoying. Like a lot of dryness. That. That's clearly from the Accutane. And it. It just Made your face, you know, bright red and de squaming and you know. [00:11:41] Speaker A: Yes. [00:11:42] Speaker B: And it's actually. [00:11:43] Speaker A: Sorry to interrupt. Which actually I think is the first side effect that I really get bad from it. So I think it's still great. [00:11:50] Speaker B: Yeah. And you look better today, by the way. I don't know if it. [00:11:53] Speaker A: Yeah, I took all the pills you sent me yesterday. Everything. I took it and I put a lot of stuff on my face. I'm like, I gotta be good in the morning. She said I would be good. I believe her. [00:12:04] Speaker B: Okay, tell me a little bit about your experience with Accutane. Because there are a lot of people still very scared of it. It's still kind of challenging to get a patient on it in the United States versus Canada, for example, where you can give refills where you don't have to do. I think in Canada you don't have to do the pregnancy test monthly. Or Australia is easier for people to get on Accutane. Here it's. There's more red tape. But tell, I guess tell us the experience you had with Accutane so far. [00:12:35] Speaker A: So far I'm into my eighth month of taking Accutane. I would say it's been a really good experience. Very little side effects. I would say I would have more pros and cons actually. I don't know if that's a good thing for Macutane. I was a person with very, very oily face, very greasy hair. I wouldn't last not even 12 hours with my hair, regular hair, I mean my hair. I have more hair. I have non greasy hair. I can go three days without showering my hair. My only cons, it is that it's getting me my skin really, really dry now. I have a little bit of a side effect of it, but besides that I don't. My stomach's been fine. The rest of my skin is. It's great because it's not as oily anymore. It's just my face. I guess because it's the skin there is more sensitive. The only thing that really has affected me but nothing else. No dizziness, no nauseous, Nothing related to diarrhea, Nothing. Nothing with that. That I've read there's so many side effects with it. I read that there was even thinning hair and like I said, my hair actually is better. [00:13:41] Speaker B: Yeah, it looks great. [00:13:42] Speaker A: Yeah, it's been wonderful for me with Accutane. I can't really say anything bad, but besides now that I'm within the eighth month that yeah, I do have a Little bit of side effect in my and my face from the dryness. But besides that, it's been wonderful. It really has been a good experience with it. [00:13:59] Speaker B: There's something I brought up at one of the visits. It's called, I'm not sure if you remember, but follicular triad or follicular tetrad. Conditions that go together. It's characterized by hydradinitis. You know what you have cystic acne or acne conglovata, that's a type of acne that's just more severe. And then dissecting cellulitis or pilonidal sinus, Pilonidal cyst. And it could be a tetrad or a triad. And you. I bring these up because there's particular patients that when they have all, you know, these go in hand, usually all three at some point or all four at some point. And you have had another thing that is very hard to get rid of that that could handicap people from working or disable people or lead to major surgery in some cases is a pilonidal cyst or pilonidal sinus. And you had that briefly and I guess kind of going to how you noticed it, how we treated it, and the fact that, you know, as of yesterday, thankfully, it is just gone. [00:15:06] Speaker A: Yes. [00:15:07] Speaker B: There's no remnants of it. It looks like there was never anything there. And a lot of people that suffer from this, they suffer a lot. There's support groups, there's, you know, people undergo multiple surgeries to get rid of it, are in the hospital for it, and all these other things. So, yes, if you. If you don't mind going into. When you notice that. Yes, how we were able to get rid of it. [00:15:29] Speaker A: So that was three months ago that I noticed it. Thankfully, my visit with you in person was coming up because it was hurting so much to sit down. I'm like, this is not normal. I mean, this is something else. Because it hurts so much. It was even hurting while I was laying down. It was that bad. It wasn't just sitting, but laying down. It would hurt as well. And like I said, I was very fortunate to be able to go that same month. I think, like, it came out like a week before, but it was already had a decent size. And that's when you started treating it the first time. And I felt relief, like in 24 hours, I felt so much relief. The pressure, the pain, everything helped with the injections I've been getting with you in the office the following month, it showed up a little bit, but it wasn't as bad. As the first time. But that time it did started to drain a little bit. And then I went back to the office to my monthly injections. And with the injection, it felt even better. And this last month, there was nothing. There's no trace of it. There's. It doesn't hurt. I don't feel nothing there when I shower. It just feels good. It feels normal. It feels normal there. [00:16:39] Speaker B: Like there was never any disease process and that, you know, a remnant of. Of anything, you know, going bad or going awry. That's excellent. Also one thing that we're doing, you know, I'm very much a big advocate for Accutane. I have a lot of patients on it online. We started because it has been a long journey. We've been on it since maybe, I believe, right since May, basically. We started adding Humira to your treatment, which is FDA approved for hydradinitis. We're also doing the injections. I wanted you to mention that if you don't mind going into it, because injections, obviously, they're. They hurt, they require you to drive from Naples. But they addressed a part of the disease that, you know, is very focal and targeted. Okay. So if you have an acutely inflamed red, you know, painful draining area, you know, that really the time and best spot to address the injections. And each time you've had you, you've come, you've needed less and less of it. You know, the first time it was very hard for you. I remember seeing you in the waiting room. It was hard to. To watch because I could tell you were in a lot of pain. Now time, it's easier for you to move and it seems like we need less and less of it. And a lot of times with the injections, we're just able to extinguish some of these inflamed areas. I guess if we could touch on the Humira, which, by the way, I looked up the average price of Humira. And this is so other people know that, yes, these are naturally very expensive, very hard to get medications. But there's things like patient assistance programs, which you're on, that covers the cost of it for a year pretty much. So, yes, people without insurance can get on this and, and they can be candidates for it. The average price for basically two pens is $7,300. [00:18:33] Speaker A: Yes. [00:18:33] Speaker B: And that's basically a, you know, a month supply. And for me, I made as a resident in dermatology up until my till I was 32. That's a lot of money because that was more than I would make each month paycheck was maybe $2,000. [00:18:51] Speaker A: Wow. [00:18:51] Speaker B: Over that after taxes and you know, my health insurance got taken out. So this is a lot of money for the average patient. Even if, you know, as a resident I would have never been able to afford this. But tell people basically that the process with the injections, what you like about it, what you don't like, how it's helped address things that maybe the, the oral medication and the, the Humira can't. And then starting the Humira, what the process was like as well. [00:19:21] Speaker A: So like I said, I've been in Accutane since May of 2024, which is my main medications that's been treating my hydranitis because I've. Mines are constantly draining all of them. And then after two months in, I started the injections, the kenalog injections, which have been wonderful at the moment. I get them, they're a little painful depending. I think the ones that mostly hurt are the ones that are more red, more inflamed. The ones are not so inflamed, but they do have drainage. Don't hurt as much. But within 24 hour I have such a big relief. They're so worth it. 48 hours. I'm good. I'm walking, I'm doing, I'm cooking. I feel great. I feel great. It's just that I notice I don't know if one of my triggers for the hydranitis is my hormones because. Because every time I'm getting close to my period, it starts to flare up. I'm close to getting this injection again. That's what keeps me going. I'm like, I'm going to feel better. But every time I go to the office, I have noticed it's last injections. My neck has been clear for months. My ears have been clear. I just cut cleared out. The ones under my under breast are cleared. I mean I've seen so much progress with them and the medication and combination that's. It's been wonderful. Now Humira has been added to it. I've read about it. I'm not so scared of it. I'm a little bit more concerned with getting an infection or something. My little girl, it is in a sponge to pick up colds and flus from school. That's a little concerning there because usually I get it after I just got to try to take care more of myself. But yeah, I got it. The process wasn't so hard. I fill out the paperwork it was sent. I heard back from the like two and a Half weeks. I heard back from them really fast. They told me I was approved and then when I see for what amount, they told me it was zero dollar. I was so, so ecstatic. I was overflowing of joy. I was like, oh my goodness, this is a blessing. This is a huge blessing. Yes, it was a huge blessing because it's very, very expensive and I wouldn't be able to afford it. So that has been a blessing for me to get it. I just started this past week. I got my starter kit with a month of product of medicine and I did my two shots. It wasn't bad. It's a little poke. It shows you there's videos which areas you can do it. It can be your thighs, it could be your stomach. It's not bad at all. I really didn't barely feel anything and so far I'm always looking for any side effects. So far I feel great. I actually feel like there was a little flare up on one of my ears on the right year and like just two, three days after. There was nothing. There was nothing. So I think that also helped. So I'm really looking forward to see what Humera brings into the plate for this whole process that I've been going through with my other medications. So I'm looking forward to see the results. I feel like I'm in the right road to the, in this journey that I've been having with Dr. Chacon. So I'm looking forward to it. I think, I think we're getting to the end of the road with this, all this process and able to just say I'm cleared, I am dry. I don't have anything else dry with any drainage with no more pain, no more flare ups. So I'm hopeful. I'm really am awesome. [00:22:41] Speaker B: Thank you so much. And of course I'm hopeful as well. If not I, I wouldn't keep doing it. Have you met other patients with hydradinitis? There are cases, you know, as bad as, as your case seems to you, which, your, your case is pretty severe. You know, it's improved a lot. But obviously any patient that has to stop working, you know, that's very severe for any condition to do that. And we don't want that of course as doctors. But I've had patients, as I mentioned to you, that they've had to drop out of college. I've had patients have to leave where they were living, move in with their family for support because they can't just live and do activities of daily living. I've had patients who can't date because they walk to a room and the smell of all the discharge is overwhelming. And you know, this is. It's mostly sebum. So even though there's discharge, one of the mistakes people make in places like the ER Urgent care, they think it's an infection and it's actually not. It's a lot of inflammation of the, of these apocrine glands that just, just drain, you know, just keeping and draining and draining. But it's not a constant infection. It just, it looks like it's to people who are not familiar with it. And then also I've had, I think I mentioned to you, I had a patient, a couple patients, not even just one, that actually wear diapers because of the. Just the amount of gauze that they can get and put on this area is just not enough. They actually have to put, you know, a diaper on or put so much gauze that it kind of simulates a diaper. Have you been able to connect with other patients or meet other patients with hidradenitis? [00:24:20] Speaker A: I haven't had the chance to be honest, to connect with anyone besides the experience I had growing up with my dad. I haven't. But if I would, I would wanted to share my experience. That's why I was a little nervous. But I'm like, yeah, absolutely, if I can put my story out to be able to reach out people with the same condition. Because yes, I did join the support group on Instagram, but I'm a little shy, so I haven't really commented on anyone or reached out anymore. But yeah, I did join a support group. So I always look at what they post, other people's story, what works for them. I'm scared. I'm very of trying anything and if I would, I would always tell you because I don't want it to interfere with my process, you know, be a setback or anything. So I really haven't tried anything. The closest that I've done is I was taking at the beginning some aloe shakes, some natural aloe, because I have here in my house, which I've always done for scarring when I've went through my C section, anything that I have to scar, I always take aloe shakes, which are fantastic. That's something natural. But right now I stopped them. I haven't take them for a while, but I think it's time maybe to start them again because everything is healing, healing good. [00:25:31] Speaker B: That reminds me, there's silicone, silicone scar gels that I like from Skin Medicinals and we'll. We'll get that. And that's why I also think it's important. You know, I did a year of general surgery before I did dermatology, and a lot of surgeons operate on this, and unfortunately, it doesn't get better in a lot of cases. And people end up. They can end up really scarred, especially the armpit, where it affects a lot of patients. They can end up not being able to even move their armpit. Wow, the scarring. Yeah. And then what would you say to, let's say, some of our hydranitis patients that might be listening, what they can do for support and their families, and families that have watched their loved ones maybe go through this. What would you say to those two groups? How can they support these patients? The best? [00:26:22] Speaker A: Absolutely. That's been a big part of my journey. My family, my husband has been wonderful. He's the one that's been helping me cook, take care of everything. That's an immense help. I can't say how grateful I am for my husband, but, yes, he helps me with everything I can't do when I'm as bad as not being able to get up, which thankfully hasn't been lately the case. But when I was like that, he was a huge help. My sister came over with those ice bags. She bought me a few of those. Those were wonderful. Ice on it. Cold, cold press. They are great. Nothing hot. It just makes it work. Cold is great. So I would say that everybody just being there, just even a text or a call, just to say, how are you doing today? It feels so good. You feel you're not alone through your process. I would say that was the most important part of so far, my journey. Just having my sister, my husband being around and helping me. Like, I already felt so bad. I felt useless when I was in bed. Like, I can't do what I usually do. You know, my husband was coming back from work and he was the one that had to cook. I felt miserable. I really felt miserable. Like, I need to do something. I can't be like this. This is not okay. So just his support, he never said, oh, this smell bad, or, you know, this we can't deal with. You know, he's not negative. He's like, it's going to be okay. This is just temporary. Come up, let me shower. Sometimes I would shower in bed. Like I have these little sponges, bus bath sponges, which are fantastic, that they come with soap, unscented soap. You just put a little water of it, you lather, and you can take a. A decent bath in the bed, it doesn't hurt, your hydranitis or anything. It's. It's great if in those moments you can't get up. He did all of that for me. I'm so grateful for the support I've had for my family. My daughter would get up and she's like, mommy, don't worry, I'll put your socks on you. You know, anything and everything that they do, because I did have a few times fever. It's been wonderful. It's been wonderful, the support I've had of all my family. [00:28:24] Speaker B: And how about work? What would you tell basically the viewers that maybe are at the point, you know, that you were at a few months or a couple years ago where you're making the decision, can I keep doing this? What would you say in terms of their workplace? How would you have done? Did you. Your workplace. I think I asked you before, but they didn't know you were going through this. Correct. [00:28:47] Speaker A: Oh, that was the huge mistake. I did, yes. Yes. To be open, to be. Not scared about it, to be. Not to not be ashamed of it, you know, that there's more people out there. I didn't know how much, how many people there is out there with this condition. I was so scared and so ashamed of it. You know, all the drainage, the pain, everything together. And I had a 1. I worked in a wonderful place. I woke. I worked at a shelter of animals. Most of the people that work there have a wonderful heart. It's amazing what the work they're doing. And nowadays I still take my animals to that veterinary that they have there in the shelter. And I bumped into them a few months ago into the director of human resources. And I spoke to her. She's like, oh, how are you doing? And I told her about it and we went to her office. She's like, oh, I didn't know, you know, we had so many options for you. You could have got an fmla, you know, family leave temporary. We. We didn't want to lose you. If you're ready to come back, we'll make a space for you. It was so good to hear that from her. It's just like I said, don't be scared. Maybe your job can help you. There's resources, you know, a lot of jobs, a lot of company have resources. It's. I think if I would have known that in that moment, I would have not let my job go out. Probably they would have let me work remotely, whatever. But not to lose that income, especially if you love your job. I love my job. You know, it's sad to let it go. And like I said, it's an income, it's a resource for you. So. Yeah, just not to be scared being to talk about it. I know it's hard. It's hard the way you can feel emotionally, mentally. It takes a toll on you. It's just getting, you know, being able to talk about it and. And having the support. Absolutely. [00:30:29] Speaker B: Yeah. And I think also at the time that you made that decision, you didn't realize that there could be help, that you could be better. So I think that's also part of it, maybe not seeing that the end of it, you know, the light at the end of the tunnel, that there is hope for you and you could get better and you could marry that process with continuing to do what you love. And I would say, you know, we're really not 100% yet, but how would you say you are compared to when you started? If you had to, you know, measure it on a scale of 1 to 10. And what has family and friends said about your progress so far? [00:31:09] Speaker A: I will say in the scale 1 to 10, I'm on a 7 because I still feel like my arm and my buttocks area is still hurting. And those are the places that most drainage. I would say I'm a seven, which is. That's more than halfway of my road. I'm really excited from the progress I've been seeing. And my family members, they were surprised the first time that my sister saw me with my face cleared. She just started yelling and jumping. She's like, oh, my goodness, I can't believe this. I haven't seen your face this clear in forever. I'm like, yep, yep. That's the first sign of the medicine working. And then it was little by little, seeing everything else too dry. Like I said, my ears, my neck, under my breast, everything else has been clearing out. My husband's amazed. He's like, wow, we hit the jackpot with the doctor. She's know what, she knows what she's doing. And like I said, it's been a blessing. It's been a blessing. Everyone's so happy. My daughter's so happy. We've gone to the mall shopping. We haven't done that in a long time. You know, I'm always so worried anything going to drain too much and it's uncomfortable. But it's been so good because the drainage is less, the swelling is less. It's. It's been so good. [00:32:19] Speaker B: Awesome. [00:32:19] Speaker A: Awesome. [00:32:20] Speaker B: And I think, you know, the easier movement, this is a chronic Condition with ups and downs and flares, but being able to just move more easily, I think will allow more breathability and less pooling of that discharge and then less likelihood of flares, basically, which, actually, I, you know, correct me if I'm wrong, but I find that in patients that it gets so bad they can't move, the process actually gets worse because they now can't move because it's so bad. You know, especially in pilonidal cyst, you see it in a lot in people who sit down and things like that. And I. I'm not sure if I told you, but my brother has hidradenitis, you know, and it comes in many. It runs in my family as well, so. And I'm very passionate about this condition because I've seen, you know, the suffering and the toll it can take. And I've also seen how, you know, current medications that we have can just turn it around and make people's lives, you know, normal again. [00:33:17] Speaker A: Yeah. [00:33:18] Speaker B: And then what would you say to someone who's maybe afraid to go online, have a virtual pick up the phone, call for help, ask their job for an extension or, you know, medical leave, tell people close around them, you know, hey, I'm going through this. I need resources or even, you know, there's people that are scared of Accutane or scared of Humira because it does suppress your immune system. Or shots, you know, the catalog shots, they hurt. You know, nobody likes getting injections. But what would you say to someone who's maybe going through this situation alone and just scared about what to do next? [00:33:56] Speaker A: Pretty much it's a little bit of my journey. I'm a person that keeps a lot to myself. I'm always been viewed from my sisters, my daughter, my husband, as a strong woman. Nothing hurts. I'm okay. So it's really hard. It's really hard to put your guard down. It's really hard to be vulnerable. But you need to reach out because it's not going to get better if you don't do anything. So it's better to try. Okay. It might not be the right treatment, but if you find the right doctor, the right place, you will get the right treatment. There will be moments that there might be a side effect, but then it can be treated. It can definitely be treated. But if there's no help, there's no getting better. So you do have to speak and all. And everyone has a voice. Everyone is just being able to use it. And it's for your own health. If there's no health, there's nothing you can do in life. There's no job, there's no family, there's no friends, there's nothing. Because then you just stay in a bed and you rot in a bed. So you have to get up and do the best you can in that moment. Give a call to someone, look, I'm in this condition. Can you please come and help? There's always people with goodwill. There's always people that are going to try to help. Always. It's just reaching out to them to get that help because they're not going to come knocking on your door. You have to look for it. And there is this. Plenty of resources. Like I said, I just got Humira for free. Zero cost pay. That is amazing. [00:35:20] Speaker B: Without insurance. Yeah, yeah, yeah. [00:35:23] Speaker A: So you have to, you have to reach out. It's the only way you're going to get better. I was one. I was one that I didn't want to tell anyone I lost my job because of that. I prefer to quit than to reach out for help. Thankfully, I have my husband. He's been great. It was a little hard telling my sister, but there I am. And I'm thriving. I'm thriving. And you also can. And it's just speaking up. We have a voice for that. Just to let people know we need help. I know it's hard. I'm one of those people I like to help, don't like to receive it back. But this journey has taught me that you have to just the way you give help, you need to learn how to receive it as well. So yes, definitely, just speak up. [00:36:01] Speaker B: And also to let everybody know, even though we all go to medical school as doctors, we do residency as dermatologists, and not everyone's background is the same. You know, when you pick a doctor, just like when you pick a mechanic or anything else, you're picking someone based on all their experiences. And for me, I always knew since I was one. I'll show you a picture. I'll take my filter off because you're going to laugh at this show. This is a photo I have here when I was one. [00:36:34] Speaker A: Oh my goodness. Adorable. With the little suit and everything. That is adorable. God bless. [00:36:44] Speaker B: So I kind of had this calling from a very young age and pretty much it's, you know, I'm 38 now. I would say since, you know, I knew how to think, I knew I wanted this and I pour my heart and soul into it. So for the people that maybe they go to a doctor, like, you know, the initial one you went to and In Naples, maybe they don't. They're not able to help you or they're not having a good day, or they don't have the resources. Maybe they don't know what a patient assistance program is because it takes a lot of administrative help to do that for a patient, you know, And I have assistants that work on that. But don't give up, you know, because look around, not everyone is the same. You could find that one person that you just bond with, like a teacher that we bond with in school. You know, there's doctors like that, too. We're not all the same. We take our experiences from a lifetime and. And use that to help each person. And sometimes, you know, we're not able to help because maybe we didn't have that experience like I did with family that had this condition or seeing it many times in. In where I did my residency training. But don't give up, you know, just because someone says, no, I can't help you, or I'm not able to help you with what I know. There is somebody out there that maybe knows something different. Not necessarily knows more, but something different that can help that patient. So how important is it to keep hope and keep your mind open when people are telling you, no, you know, I can't help, or maybe I'm not the right one to help you through this? [00:38:20] Speaker A: It's very important. It's. I think it's one of the main things that you have to not lose your hope to continue, to continue, because you'll find it. Be positive, which sometimes being in this situation, it's hard to be. You feel, I. Like I said, I couldn't shower. And then when I did try, I felt like I'm not getting better. That's what I kept telling myself. I'm not going to get better. This is going to be forever. That's what I felt. But it's just trying to be positive and being surrounded by positive people. My husband is. I don't think I've met anyone more positive than him. He's the light in my life. He's the light that guides me. And it's sometimes scary, but, yeah, it's just trying to keep that thought that, yes, I will find the right one. I will. Like I said, you might fail in that, and that might have been the right treatment for you, but there is. There is the right doctor, the doctor with the enough experience and knowledge to help you in your condition. There is out there. I found you. I'm sure that more. More people out there can find you or find someone near them. Because yes, sometimes you do need these in person visit, not just virtual ones. So yes, there is people with a lot of knowledge out there. To not be scared to find it, to not give up hope is there. Grab onto it as hard as you can and keep, you know, fighting for that. Keep looking is important. It's just important to try to try to do it. Because if you don't try, it's not going to happen by itself. You have to continue and just hold tight to hope this is going to work. I'm going to get better and once you find it, I'm going to be normal again. I'm going to go back to work. It's going to be hard. I've been on this for what, 10 months since I met you, 8 months on Accutane and I'm there. It hasn't been, oh, okay, today I'm better. I'm going to start it in three months. I'm going to be okay. No, because it also depends on how severe or what type you have. But as long as you see progress and improvement, you hold on to that and you keep going. But for that you have to look for help. You have to try doctors. I tried my primary, then I tried a dermatologist, didn't like it. And then third time is a charm. I found Dr. Jackholm. So it's just continue. It's just to continue and not give up. Don't lose hope. There is help and resources out there. You can get how even if you don't have insurance, there's help and resources. [00:40:46] Speaker B: Awesome. Thank you so much, Janet. [00:40:48] Speaker A: No, thank you. [00:40:49] Speaker B: Really enjoyed having you. Thank you for your time and then thank you for sharing your story and I look forward to continuing to help you. Okay. [00:40:57] Speaker A: Thank you for having me. It's such a pleasure. Thank you. Have a great day. Sam.