speaker-0: name is Jovette Simmons. ⁓ My profession is an assistant controller and accountant.

speaker-1: Can you tell me about your own health journey?

speaker-0: Um, yes. So I have a skin disorder. It's auto-inflammatory. It's called hydridonitis supportiva, short for HS. Um, and I've had it since I was 13, so I'm stage three. Um, and it's, it's been challenging. Yeah, it's been challenging. I did not get, getting effective treatment until about three to four years ago when I went with Tonal Health. because that's the first time I actually seen a specialist. ⁓ The best way I would say it is now I have my HS is being managed before the doctors were trying to manage the HS symptoms, if that makes sense. So I don't know if there's anything else you want me to tell you.

speaker-1: No, that was good. So how are you doing now?

speaker-0: ⁓ My quality of life now is great. know, I am married now. When I started, I'm just comparing it to before I started with Sonal Health. I'm married now. ⁓ I started my own accounting firm. So my quality of life has drastically changed and I'm at peace, which is hard to do when you're in pain. People with HS, you don't get a lot of peace.

speaker-1: How has treatment helped your confidence?

speaker-0: ⁓ my confidence, it's helped by just, I'll give you one example. you, what HS, you don't, for me, I'll speak for me. You don't get to wear all types of clothing, like shirtless, you know, sleeveless, colors. You tend to stay away from those. used to wear black a lot and that wasn't by choice. And now. As you can see, I got a purple blazer on. So I'm able to express myself. I express myself through fashion and stuff like that. And I'm able to do that now freely. So it is really liberating. And before, it was limited. So it's fun now.

speaker-1: And you talked about the treatment from Tonoh Health earlier. Can you tell me about your relationship, how they helped you?

speaker-0: Yeah, so ironically, I found out about Tonal Health through a Facebook group. Someone was, this is when they were just developing their website. And the one thing I've seen was that you can see an HS specialist. I didn't even know that exists. And I've had it since I was 13. And I'm 39 now. But so I did it just to just get in touch to see the doctors. And the care has They all telehealth, actually up until just a few weeks ago, I had never met my doctor. She's the best. name is Dr. Gias. Never met her in person. So imagine just the dynamic of someone changing your life that you never met in person. And I met her for the first time at their new office in Brooklyn. the treatment, the one thing that stood out is Dr. Gias. was a good listener and she was concerned with all around treatment. With HS, people can have different triggers. One of my triggers is my diabetes. So you got to work with an endocrinologist. She's seen, you know, they do surveys on like your mental health. She'd seen my score. It was really low. So she was concerned about that and We talked about everything. And so immediately I felt comfortable with her. I think that allowed me to have a positive ⁓ outlet, but she cared. And honestly, with a lot of doctors, you're just a number. And they may not say that, but you feel it when you're in their office.

speaker-1: What does your doctor mean to you?

speaker-0: My doctor means to me that I truly have a support system and a professional, you know, it's different with people. Personal, they'll tell you everything's gonna be okay, just trying to soothe you. But to have a doctor that actually cares, I know I have support and I don't feel hopeless anymore. So I'm actually being treated right now. we're doing proactive treatment. What I mean by that is we're just keeping up with the lessening of flares. ⁓ It was very aggressive treatment in the beginning. I I had surgery. A lot of people with HS do not. am pro surgery, depending on. For me, that's what I needed. And so now we're just maintaining my quality of life. And if I have a flare, we're on top of it immediately. So, and with the telehealth, a lot of people may be apprehensive because it's online, but it's actually an advantage. If you have an immediate concern, you can, you have access to a chat. There is business hours, but it's really responsive. So sometimes it takes you weeks to get in touch with a doctor. And with tonal health, that they're readily available to you actually by it being, you know, telehealth. So it's funny.

speaker-1: Can you imagine going through this without the technology that helps?

speaker-0: No, you know, honestly that and I never, cause I was pretty against like telehealth, you know, the COVID really kind of started making that, you know, you know, more popular, but. Dr. Gias was able to talk to my different doctors, my surgeon, the endocrinologist. Technology allowed all of that to work cohesive. I'll give you an example. For when I went to the emergency room, doctors, they didn't really know how to treat it. But Dr. Gias had like, kind of like a care treatment card that could be given to them. sent it one time I had to care or urgent care. She sent it for them. They knew how to treat me and the treatment seemed like so I love technology. Yeah.

speaker-1: ⁓ You think of the skin condition as physical, but how does that take a toll on your mental health? And when it works, how does it help your mental health?

speaker-0: ⁓ I would say for me, mental health is something that can become low on your radar, right? Meaning like you don't prioritize it. For me, HS has made me more intentional because you can go in a really dark space when you are physically in pain. You know, your mind will follow those things. And so You can go into a really deep area of depression and anxiety. You can be in a very bad place and stress is one of my triggers. So that's going to make the flare even worse. But to answer your question, mental health is a priority for me. I am big on getting professional help, not trauma binding with a friend, going to see a nurse practitioner, going to see, ⁓ a therapist and getting all the help that you need and knowing that it's okay not to be okay, like seriously, and seeking help. So I'm big on that. I'm also a Christian. So prayer is my safe place. I know that I have Jesus, that I can have faith in him. So, but the combination, you know, with life, you have to be one with yourself. It can come spirituality. health and mental health. You can't do nothing without a sound mind. You can't. Yeah.

speaker-1: How does faith play a factor in your life?

speaker-0: Faith allowed me to stay calm in situations where I really wasn't being treated well as a patient. I wasn't being heard. wasn't being, the treatment wasn't well. It allowed me to not get caught up in my emotions, but to be able to still be an advocate for myself with being calm, being peaceful. And that took prayer. You know, I pray a lot. so even in the times when my HS was the worst, because with HS is usually not always is in private areas, right? Where people cannot see. So a lot of people with HS are suffering in silence. So you don't know that they're in pain. I am an accountant. There was plenty of times I was in a board meeting and my I was throbbing in pain. so I had to, my faith allowed me to say a little prayer and like just calm my body and calm my mind to be able to deal with HS because HS can take over your life, honestly, where you're not living a good quality of life at all. I was there and that's not a good place to be.

speaker-1: You talked about your relationship with your doctor, but how important is it to have a strong team family support system by your side?

speaker-0: You know, I partner with Tonno, was liberating for me about talking about my HS out loud. There's a lot of embarrassment and shame that come with HS. So I'll be honest with you. In the beginning, once the doctor taught me wound care at the age of like 14, I did not share with any of my family and friends. So it was very isolating and feeling alone. But now, having a conversation with my son that's 16, my husband, he actually came with me, seen it, know, ⁓ is liberating to be able to tell people like, this is why I'm in a bad mood because I, this is what's going on. And the support system of just being there when you can't move, having someone there to keep your mind off of the pain. ⁓ It keeps you sane. Like you can't do it without a support system. And when I was forcing myself to do it without a support system, it was even worse because I felt like I had nobody to talk to about it. And at the time I didn't have the right care. So that's not a good feeling.

speaker-1: How does it feel for you to say your story publicly?

speaker-0: For me, it's friends now. there's with Tonno, they did like this study, it was a little article. And I sent this to my friends, like, look, look at this. Like now it's so like, and you know, they'll say, wow, I didn't know you were going through this. So it's liberating. There's healing and freedom, right? And there's freedom and healing, the me speaking out loud about it. freed me from being ashamed. It freed me from thinking that I had to live this way forever. And also knowing if I could just help one person not go through the pro long that's I remember saying that's a doctor packages help one teenager get be able to get the right treatment so when I'm on Facebook, I'm in groups with people a chest. People put some very hard. horrible, you know, post about what they I will immediately inbox them and be like, I'm stage three. You don't know me. I'm not crazy, but I know a specialist and I will give them Dr. Gias because they're the HS community is crying out for help. So it's liberating to answer your question. I don't mind at all.

speaker-1: What advice would you give anyone who is suffering in silence?

speaker-0: Yeah, I actually, ⁓ Well, let me just say it. I wrote something, but what I would say in a nutshell is that HS does not define who you are. ⁓ And that a good quality life is feasible. There's no cure for HS, but you can have a good quality life where you're managing the HS and it's not managing you. And the other thing, the biggest thing is to never give up on yourself and always be an advocate for yourself. Don't be afraid to do that. There's times you can be in a doctor's office and the doctor's not listening to you. It's okay to stop them and speak up for yourself. And don't just accept the bare minimum because there is real help out here. I spoke to Dr. Giyas and they're doing clinical trials, you know. The future looks so bright. I pray they come up with a cure. That would be great. But like the fact saying that, you know, there is no cure, but the medical world is paying attention to us. So there's hope. It's here. Yep. And to stay in courage. That's what I would tell somebody. Stay in courage. And if they were in pain, if I was near them, I would give them a big hug.

speaker-1: How are you doing now?

speaker-0: I'm doing, I'm doing great. But the questions you asked about the mental health, it took time. It's, I'm not going, this took, this is where I'm at now, took years. ⁓ and I do have still moments where, you know, depression, anxiety, those things. ⁓ but I am actively putting myself first in my physical health, my mental health. And it feels good, you know, and I'm at a place where I have accepted who I am and I have accepted HS. I used to look at it before as a curse, but it's not a curse. ⁓ You know, and as Christians, we say we have to bear a cross dearly. HS is just my cross. So I'll pick it up, but I'm going keep pressing forward. So I've always been resilient, but now I feel like I could accomplish anything. So I'm in a good place.