An interview with Tono patient Jovette Simmons
The below is a transcript of Jovette's interview, with edits for clarity.
Jovette’s experience with HS when she was first diagnosed and over the course of her childhood
When I was first diagnosed with HS, I was 11 years old. I'm 36 now. I went to three dermatologists. The third one was the one who actually put a name to it. The other two, they were treating it more like eczema. Topical treatments never worked for me. So the third dermatologist is who actually put a name to the disorder and told me it was HS. But she did not have a lot of experience with HS. Ironically, I didn't know what stage I was until I started to see Dr. Ghias with Tono Health. So even throughout my treatment, I was never told what stage I was. I started to hear that lingo and terminology on Facebook groups. People would say “I'm stage one, stage two, stage three,” and I didn't know what they were referring to. So it was a bit of a scavenger hunt to try to find treatment when I was younger.
The impact of getting diagnosed incorrectly and getting treated in ways that weren't helpful
It got worse. It was exasperating. It went from certain areas and then it escalated into tunneling. When I was younger, I didn't have tunneling. It was just certain affected areas. And then, as time went on, those areas got larger and larger and larger. Again, I didn't know what was happening, but now I know what it is. Tunneling, and then more scar tissue, it was just a domino. It allowed it to get worse, even though I may have been under treatment of a doctor. But the incorrect treatment is like having no treatment at all, honestly. Dr. Ghias was the first doctor that knew what she was talking about.
Having it since I was 11 and now being 36, I had to start doing my own research and figuring out what was going on with my body. I relied a lot on research and articles and stuff like that. It’s like having this pool of information or pieces of a puzzle, but not being able to put all of it together or know what applies to you.
After doing the intake process with Dr. Ghias and sending pictures. I also would like to note that that was my first time. I know it sounds weird. I do not like looking at pictures of HS, but I was very open-minded. Part of it is the shame that's associated with it, but it was my first time ever taking pictures of my own areas. When I got on the line with her, she was confident. She explained medically what was going on. It was just laid out. It was like this light was shed on all of this information and allowed the pieces of the puzzle to be shuffled and put in the right place. I used to either leave the doctor's office in pain or frustrated, and this was the first time I ended a call and I was happy, like I had hope.
How living with HS has impacted Jovette’s life
I think having HS completely destroyed my self-esteem. My self worth, that whole process, I think that probably would have been much different if I didn't have HS. But I struggled with that even before I had a chance to even start building it. And I feel even for people who have HS on visible areas. I know men get it on their necks. Some women have it on their necks, their chins. But because it's in your private and intimate areas, it affected my thoughts of even being able to be in a relationship. So that's where it started.
Fast forwarding to early high school, when friends started to date and stuff like that, I thought in the back of my head, “Oh my God, I'm never going to be able to date. I'm never going to be able to have a relationship.” And so it was heartbreaking and it destroyed my self-esteem, and now it's taken very hard lessons, some very bad relationships, but maturity and being my own advocate. It's funny, when I became a part of this team, I put on my signature HS Queen, and you don't feel that way, but you gotta own it sometimes and say, “I'm going to demand this.” That was part of my initiative, the drive behind being a part of Tono Health and giving it a chance. I'm like, if there's a team and I heard “HS specialist,” I'm on board. Just if it opened up an opportunity for me to meet a doctor that could connect me to another doctor. I just was blessed to get a great doctor in Dr. Ghias, but it's been hard.
I'm an accountant. I'm an assistant controller now, but I started my career in the city. I used to work in Chelsea Pier, commuting from New Jersey. When you’re having a flare commuting on the train. or standing on the train or sitting for long periods of time, we can't just call out. There were deadlines. There was no remote work. We didn't have any hybrid work, so I had to go in. There were days I was just in pain and I used to just manage it. I actually am not a big fan of a lot of over-the-counter pain meds. So I did not take them. So now I'm putting myself even through a higher level of pain. So I became comfortable with being uncomfortable.
Pain became a part of my every day. I just found ways to cope with it. And when I could not bear or cope with it when it was excruciating, that's when I would go to a hospital or my doctor for injections. But yeah, professionally, it affected me.
Jovette’s experience going to hospitals or ERs without a physician who could explain what was going on
The experience was frustrating. I was angry. I was always on the fence when I got there because you're going through the same process. HS doesn't change. Meaning the process of what happens with your body. It can be in a different area, whatever, but the disorder affects you the same way. I would meet doctors that hadn’t heard of it. They would not tell me, but I knew it was their first time seeing HS, the stage that I had, because I'm stage 3. And no doctor's ever going to say, I can't treat you. I think by law they can't deny you treatment. But in any case, it became frustrating.
Every treatment to relieve the pain is painful. When you go to the hospital, usually they'll drain it. Sometimes they'll pack it. And for me, that didn’t get rid of the pain because you're in pain maybe three to four days after until your antibiotics and your body starts healing. But those areas always came back. I feel like all the ones that I got treated in the emergency room, once it healed and came back, it was worse. That just wasn’t the right way to handle it. And when I would get injections, the steroid, for me it was Kenalog. That's what they would normally do in the doctor's office. It was so painful with tunneling just in one area. Let's just say my worst area had like 15 areas. So they would have to do the 15 injections within those areas. And now speaking to Dr. Ghias, they were not even injecting the right amount of units, which makes sense because in the beginning it used to work it hurt like hell. But by the next day I was able to at least move around. Eventually as my HS became acute or worse, it stopped working. So I would get the injection, and then a few days later it would start to get worse. So it was frustrating. So when I'm coming to see a doctor, I'm already on defense. They recommend antibiotics. I say no, that doesn't work. I felt like I was teaching them how to treat me. It was frustrating beacuse as a patient, you're coming to a doctor for help.
What made Jovette decide to sign up for Tono Health?
Christine, your patient advocate. Actually, it was shared on a Facebook group that I'm a part of, and it was the first Facebook group that I was a part of just to show me that other people had HS. And when I looked at the subscribers, it's in the thousands. That was comforting just to know that there were others. In her post, I saw “treatment” and “HS specialists.” And that's what I've been trying to find, I wanted to see a HS specialist. I've heard of the different clinics, but they were not in my area. So I thought, this is an opportunity for me to see an actual specialist. So I jumped on it. As I said before, my pain drove me to have this perseverance that I'm going to find the best treatment possible. That's what drove me to continue. I'm not going to stop.
I'm not going to give up on myself. I'm going to find someone who’s going to treat this disorder. Someone's going to help me.
What Tono can help patients with HS achieve
Tackling HS from every angle, meaning treatment, whether it’s topical, antibiotics, infusions. Whatever is best for that person. A plan of action that allows the patient to be proactive, meaning not waiting until it gets worse to treat it. Also, minimizing the flares. A plan of action in case of emergency.
As I am working with Dr. Ghias, I just had an acute flare and I was in so much pain. I'm in upstate New York. Her trying to find somewhere to do the injections, the intramuscular, or any injection was a task. So now she's working with my primary care, and that is in the works to get that laid out just in case I do need to get treatment where I need to go in person. So I think it gives you a plan of action. So when HS rears its ugly head, you're not just just waiting to get an appointment with your doctor. You have access to send an emergency email, and then for someone to get back to you. But also it holds me accountable that there's a part, as a patient, you have to do yourself. I have to take care of making sure my diabetes is under control, lose weight, all of those things.
I just feel like I have a partnership with Tono Health. I'm not doing this alone anymore. I have someone that is advocating and willing to help me along the way. It's comforting. There's no cure, of course, but I have a doctor by my side that's like, okay, we’re going walk this together and get you in the best shape possible. So I'm blessed. Tono Health has been a blessing. I brag about seeing an HS specialist. About working with a specialist. I tell my friends and my family. And I'm proud to be a part of this team and this journey. When I'm on those Facebook groups, I see kids getting diagnosed very early, their parents asking for doctors. I just feel for the parent and I feel for the child, knowing the long road that they have. So I'm hoping that Tono Health can help speed up that process, because it took way too long for me to get diagnosed. So I'm hoping that it could help someone younger than me not go through as harsh a process.
What should parents who have a child with HS know?
That you are worthy. You are not your HS. HS does not define us. It is an overbearing disorder where it can become the main point that just takes over every part of your life. But that is not what defines you. Please do not take any advice from anyone other than a professional, a medical professional that specializes in HS. Do not take it, because everybody's walk is different. So do not go to the internet for treatment because things that work for one person may not work for you. So take on this journey as your own. You get to know your body and you seek the right medical professional care to help you.
Do not ignore your mental health. For me, my treatment in HS was very reactive. I had my ways of coping, but because I wasn't getting treatment that was long-term treatment, I would still always have very bad flares once to twice a month. On a bad month, it could be five times a month. So I was always treating the flare and it weighed very heavily on my mental health. Untreated mental health is just like untreated hs. And so just advocate for yourself, don't give up on yourself. That's what I would say to every person that has HS.
And Tono Health. I learned about this from a post that was shared on a Facebook group. So I came into it with my eyes open like, is this real? Is this really going to help me? I had questions. But have an open mind. The treatment itself will prove to you that the doctors you're working with know what they're talking about.
Want to learn more? Access more educational content about HS at our YouTube channel.