House Calls - Case #02 Athena
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My name is Athena Giorgolini, and for 15 years, I struggled with a disease known as hydrogenitis suppurativa. So right around puberty, like 13, 14, I started noticing these tiny little pimples appear in between my thighs, my underwear line. I had a couple in my armpits.

So at 21, one day I was having this kind of growing pain. I had to go to a doctor because it just wasn't going away. And he told me that what I had was a perianal abscess. And he looked at me straight in the eyes and said, perianal abscesses are caused by poor hygiene. And if you want to stop them from happening again, you need to take better care of yourself.

A decade goes by and Athena still doesn't know or understand what's happening to her body. It was watching my body start to deform by itself. Like it was doing it to itself and I couldn't do anything to stop it. No matter what I changed in my life, it was just becoming its own thing on my body. I got married, but I didn't talk about it with anyone.

But when her husband fell seriously ill and immunocompromised, Athena worried she would expose him to risk because of her so-called infections. That's what made her return to the doctor for the first time in seven years. So the first doctor visit that I went to, the doctor takes a look at it and says, it's Mersin, which is some sort of infection. But he gives me a prescription and he says, if this doesn't clear up in five days, come back.

And so I went back in five days because it was exactly the same as it was before. But this time I got a brand new doctor. And I always like to joke and give the Doogie Howser reference. He looked so young. He was a baby and had just probably graduated medical school and had just gotten a more up-to-date education. And so he takes a look at my armpit and he says, that's not MRSA. That's hydrodinitis suppurativa. ♪

Welcome to House Calls. I'm Lauren Bright Pacheco. On these special segments, we'll check in with friends from former symptomatic episodes for updates on their health and lives since we last connected.

Hey, Athena. Hi. So good to see you. Good to see you too, Lauren. I'm so excited to be back here. I am so excited to see you. I can't believe it's been this long. You were our second episode. It was 2022. Yeah. How have you been? I've been so good. It's really good to be able to do this follow-up from such a good place in my life, both physically and emotionally, and I'm so excited to be back here.

I'm happy to report that I'm in the best health probably of my life. I can tell. You're glowing. You are just radiating happiness. It's wonderful to see. Thank you. How is Homer? He's good. He's in a crate behind me because if I didn't do that, he would also be participating in this podcast. But he's seven now and he is just as goofy and fun-loving as he's ever been.

So anybody who does not remember Homer from the previous episode, he is a Basset hound and the name is a nod to both your Greek heritage and The Simpsons. Yeah. Which, you can't get better than that. Right.

So I'm going to give anybody who didn't listen to your episode a chance to pause and go back and listen before they hear the update. But I just want to explain that you started exhibiting symptoms when you were just entering puberty and that you were diagnosed...

Many years later, with hydrodinitis superativa, or HS, and it's a chronic inflammatory disease that attacks skin cells, causing inflammation and rashes on the skin, there's still a lot that's unknown. And because the symptoms can mimic other skin conditions, namely cystic acne, it's often overlooked or goes undiagnosed. Right.

Can you just share a quick recap of how long it took you to get your diagnosis? Sure. So if we count initial symptoms starting at puberty, that was probably like 11 to 13. And I was formally diagnosed at 28. Symptoms really kicked in right when I was around 21, like the most noticeable one and where I got my first misdiagnosis, the first time I'd ever seen a doctor about this.

15 years, I would say, from initial onset, but seven years from the time I'd first received, you know, medical care and then a misdiagnosis. You know, what resonates so deeply with going back and listening to your episode is the amount of shame and guilt you internalized from the onset of symptoms. Yeah. And that only reinforces internal feelings that you're already having. Mm-hmm.

It pushes you further into isolation. It makes you feel like it just confirms almost like your worst fears about what's going on with your body. And it's so hard.

to undo that. Even to this day, when I'm talking about it with people, I know full well the medical mechanisms that go on to this disease. I stay very educated, right, up to date with the research. I know that this is not my fault, but I still almost initially, when I'm explaining it to people who don't know, almost get a little defensive because of that reinforcement of the misdiagnosis that I had.

And it becomes so cruel because you're feeling in a very isolated way, singled out and betrayed by your body. And then you're being told that you've betrayed your body by not taking care of it properly. And it becomes just an emotionally grueling cycle, I should think. Yeah.

Yeah, it was difficult and really depressing. And you start to understand when we look at the mental health tolls that this takes on patients, you really understand that. Because again, it's your worst fears being confirmed by somebody with a medical degree. Like this is not a random person who is sick.

uneducated about the human body, just making assumptions. This is someone that you consider to be knowledgeable, confirming your fears. It's really hard to undo that. It's really, really hard to undo that. You are doing some heavy lifting to undo it, though. Can you just talk to me a little bit about stepping into advocacy for other people who are dealing with HS?

I think that's one of the most empowering things that I've been able to do is really talking to people. So in the work that we do as advocates, a lot of it is connecting with patients. And most of the time, it's just being brave enough to be the first person to say, this is what's going on with my body. Because the minute we can, as advocates, say, hey, this has been my experience. This is what happened. Can you tell me about yours?

we kind of free them by being the first ones to do it. And now they can connect with that. And now they're like, this is a safe environment. This is why I'm such a proponent of the support group model and the magic that gets done in the work of the support groups, but even just talking to patients and talking to people in general. In advocacy, the biggest and the hardest thing you can do is to just open up and tell your authentic story.

You know, I've always believed that vulnerability ultimately is a superpower. And your story illustrates that, honestly, more so than any I think we've told. Because you went from feeling isolated and horrified, trapped in what felt like a living nightmare in your bathroom, to speaking openly about it in front of conferences, and

And I'd love to know if you've had any kind of response to the episode that we taped together, because I just thought your authenticity and your honesty and your bravery was staggering. Well, thank you for that. It was a really freeing and liberating experience for me as well.

The feedback that we've gotten from within the HS community has been great. So many people have listened to it. I've gotten emails and responses from it. I was so fortunate to be given this platform to just come on and really, really kind of walk the public through my story, right? Because when I speak at a lot of these conferences, they are geared toward dermatology and the dermatology community. And I get that. It's very much needed. I've

I've done some really cool things, you know, in between when we recorded to now. And I love educating the community, but the general public as well. People who might have this disease or think they have this disease or even have something similar can listen to this story and find something to connect with. And that has been amazing to look back now and say of all the work that I've done, I've been able to do this as well.

The feedback has just been really good and really positive. Even the comments that people have left on the podcast were pretty amazing. Absolutely. You know, I don't know if you saw this one, but there was a doctor who said that he diagnosed somebody with HS after having listened to the episode.

There was also an email that we received from a woman named Cheryl. If you don't mind, I'd love to read it to you. Yeah. She said that after listening to the episode featuring Athena, who shared her journey with HS, as someone who unknowingly lived with HS for so long, Athena's story hit me hard, to say the least. For nearly 10 years, I felt isolated and misunderstood, not knowing the name of the condition that was literally derailing my life.

Athena's story reminded me that no one is truly alone in this battle. It lit a sense of understanding that has been missing for far too long. Her bravery in discussing the physical and emotional toll of HS has empowered me to navigate sharing my experience more openly too.

After listening to the episode, I shared it with my mom. She had struggled to believe and understand what I had been through for many, many years. Hearing the similarities in Athena's story helped her see the reality of living with HS from a wider point of view, and I can pretty confidently say it brought us closer together.

I think it was a moment of validation and connection that we both needed. This episode is a must listen for anybody dealing with chronic illness. Thank you, Athena, for your bravery and for helping me feel seen and understood. Best, Cheryl. Oh my, it's kind of hard to fight back the tears with that one.

Cheryl, that's amazing. And I'm so honored that this has done that for you and for your mother. I can actually relate to that. I've told my friends and family about this, but my father listened to this, the episode, and I'd never opened up with him in the way that I kind of had with this podcast, right? I'd never gone into the details. And my dad actually cried listening to this episode. And so, yeah, Cheryl, I...

It's so hard, right, to have gone through this. And then I think we're worried, right, that people aren't going to necessarily fully connect with or like, you know, in our inner circles, fully empathize with what we're going through because we're so used to being minimized with this condition. And with chronic illness in general, people don't take us seriously when we say, I can't get out of bed this morning.

I had a hard time brushing my hair this morning. Everything I do is exhausting. My energy levels are just depleted. Sometimes we just don't even bother opening up to the people that we love because we're just on top of everything that we're going through. We don't want to argue with them. We don't want to have to continually explain and continually defend as well. So Cheryl, thank you so much for sharing. I'm so glad that this was able to help you.

I mean, it's a wonderful, honestly, gift that you've given people, your bravery and your courage and being so open and honest. And again, it's a superpower and you're a superhero. And talk to me a little bit about your ongoing progress.

So I am very happy to report that my HS is probably the best it's been in my entire life. I am on a combination of medications. It's a new biologic.

The combination of the biologic and the spironolactone seemed to take my HS to like a two out of 10, right? Like 10 being worst, one being, you know, nothing. It seemed to really take it there. We added the birth control component and it put me into remission. Athena, that's wonderful. Yeah. So I've had a bunch of surgeries to remove the HS and there's still a little bit left, but I actually recently went in because I was like, I just want to get the

at the last of this taken out and taken care of. And they had said that I'm so well medically managed that there was no reason to go back in and to remove what was left because it's the best it's ever been.

What are some new things that have changed since we last spoke? What are some new interesting things you're taking on? So I've lost 125 pounds. Wow, Athena. Yeah, that's one of the coolest things is just I have the ability, right, to move my body now in ways that I hadn't. And I have energy levels that I didn't quite have before because my body is no longer busy fighting something.

And so now going to the doctor really isn't all that stressful. I'm so happy and I'm sure that your social life has expanded with these new ventures as well.

Yeah, I do so much now with my friends and with my family. I'm the one now that's like, let's go hiking this weekend or let's do some crazy adventure because I can move my body both with this disease and remission and the combined weight loss. It feels like a regeneration of myself without even like the chains of depression.

I feel better and I feel more confident within myself to go out and finally live the life that I've always wanted to live or really in creating a life that fulfills me. I can't tell you how happy I am for you and what a wonderful two-year check-in this has been. So much has happened and I'm so happy that you are on such a wonderful path.

And so thank you so much for sharing your voice and for agreeing to check back in with us because you're inspiring so many more others to find their own. And that's a wonderful thing.

I'm so grateful for this platform and the opportunity to tell my story. People like Cheryl and Hannah, like, that was the whole goal was to reach out to patients and to educate the general community about this disease. It was hard, but I think at the end of the day, it's easier to connect with a real life story, which is what your entire series did.

As opposed to just throwing out medical explanations or literature, we are adding the human component to it and people will find connection. You know, I listened to the other episodes as well in that first series and I'm now just starting to get into the second. And the power of storytelling and hearing people speak their truth is also really inspiring to me.

You guys have done a great job with allowing patients to really speak their truth and in an honest and meaningful, impactful way.

I know my entire team appreciates that because that's why we're doing this. And so thank you for being one of those individual voices who, again, has given voice to so many others. I wish you so much continued success. And I so look forward to our next update to see what you're up to then. Anytime.

On next week's episode of Symptomatic, Scott Collin was in the best shape of his life leading up to his 40th birthday when he noticed a small bump on his nose. He initially ignored it until the symptoms spiraled into a life-threatening condition leading to an extended stay in the ICU. ♪

They're wiring me up and cutting my shirt off and getting me on a gurney. You've got an ambulance, sirens going, and it was frightening. And that was the moment I was like, this is it. This is where I go. This has been House Calls. Thanks for listening, and we would love to hear from you too. You can email us at symptomatic at iheartmedia.com with thoughts about other episodes or to share a medical mystery of your own. Until next time, be well.

When hydradenitis superativa symptoms take over, it's tough. Bumps and abscesses keep coming back. But don't give up. Keep trying, fighting, and using your voice to find relief. I asked my doctor about Cosintix. Cosintix-Equinumab is prescribed for adults with moderate to severe hydradenitis superativa 300 milligram dose.

Don't use if you're allergic to Cosintix. Before starting, get checked for TB. Serious allergic reactions, severe skin reactions that look like eczema, and an increased risk of infections, some fatal, have occurred. Cosintix may lower ability to fight infections, so tell your doctor if you have an infection or symptoms like fevers, sweats, chills, muscle aches, or cough. Had a vaccine or plan to, or if IBD symptoms develop or worsen. Learn more at Cosintix.com or 1-844-COSINTIX. Talk to your dermatologist about Cosintix.