WEBVTT - House Calls - Case #02: Athena

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<v Speaker 1>My name is Athena gier Bellini, and for fifteen years

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<v Speaker 1>I struggled with a disease known as hydrogenitis superativa. So

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<v Speaker 1>right around puberty, like thirteen fourteen, I started noticing these

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<v Speaker 1>tiny little pimples appear in between my thighs, my underwear line.

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<v Speaker 1>I had a couple in my armpits. Okay, So at

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<v Speaker 1>twenty one one day I was having this kind of

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<v Speaker 1>growing pain. I had to go to a doctor because

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<v Speaker 1>it just wasn't going away. And he told me that

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<v Speaker 1>what I had was a pery anal abscess. And he

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<v Speaker 1>looked at me straight in the eyes and said, pery

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<v Speaker 1>anal abscesses are caused by poor hygiene, and if you

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<v Speaker 1>want to stop them from happening again, you need to

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<v Speaker 1>take better care of yourself.

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<v Speaker 2>A decade goes by and Athena still doesn't know or

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<v Speaker 2>understand what's happening to her body.

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<v Speaker 1>It was watching my body start to deform by itself,

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<v Speaker 1>like it was doing it to itself, and I couldn't

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<v Speaker 1>do anything stop it. No matter why changed in my life,

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<v Speaker 1>it was just becoming its own thing on my body.

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<v Speaker 1>I got married, but I didn't talk about it with

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<v Speaker 1>anyone but when her husband fell seriously ill and immuno compromised,

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<v Speaker 1>Athena worried she would expose him to risk because of

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<v Speaker 1>her so called infections. That's what made her return to

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<v Speaker 1>the doctor for the first time in seven years. So

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<v Speaker 1>the first doctor visit that I went to, the doctor

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<v Speaker 1>takes a look at it and says it's mersin, which

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<v Speaker 1>is some sort of infection. But he gives me a

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<v Speaker 1>prescription and he says, if this doesn't clear up in

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<v Speaker 1>five days, come back. And so I went back in

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<v Speaker 1>five days because it was exactly the same as it

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<v Speaker 1>was before, but this time I got a brand new doctor.

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<v Speaker 1>And I always liked to joke and like give the

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<v Speaker 1>Douey Houser reference. He looked so young, he was a

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<v Speaker 1>baby and had just probably graduated medical school and you know,

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<v Speaker 1>had just gotten a more up to date education. And

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<v Speaker 1>so he takes a look at my armpit and he says,

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<v Speaker 1>that's not RSA, that's hydrodinitis superativa.

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<v Speaker 2>Welcome to House Calls. I'm Lauren bried Pacheco. On these

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<v Speaker 2>special segments, we'll check in with friends from former Symptomatic

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<v Speaker 2>episodes for updates on their health and live Since we

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<v Speaker 2>last connected.

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<v Speaker 1>Want. Hey Athena, Hi, so good to see you. Good

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<v Speaker 1>to see you too, Lauren. I'm so excited to be

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<v Speaker 1>back here.

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<v Speaker 2>I am so excited to see you. I can't believe

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<v Speaker 2>it's been this long. You were our second episode. It

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<v Speaker 2>was twenty twenty two. Yeah, how have you been.

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<v Speaker 1>I've been so good. It's really good to be able

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<v Speaker 1>to do this follow up from such a good place

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<v Speaker 1>in my life, both physically and emotionally. I'm happy to

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<v Speaker 1>report that I'm in the best health, probably of my life.

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<v Speaker 2>I can tell You're glowing. You are just radiating happiness.

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<v Speaker 2>It's wonderful to see.

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<v Speaker 1>Thank you.

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<v Speaker 2>How is Homer.

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<v Speaker 1>He's good. He's in a crate behind me because if

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<v Speaker 1>I didn't do that, he would also be participating in

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<v Speaker 1>this podcast. But he's seven now and he is just

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<v Speaker 1>as goofy and fun loving as he's ever been.

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<v Speaker 2>So anybody who does not remember Homer from the previous episode,

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<v Speaker 2>he is a basset hound and the name is a

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<v Speaker 2>nod to both your Greek heritage and the Simpsons. Yeah,

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<v Speaker 2>which you can't get better than that, right, So I'm

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<v Speaker 2>going to give anybody who didn't listen to your episode

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<v Speaker 2>a chance to pause and go back and listen before

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<v Speaker 2>they hear the update. But I just want to explain

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<v Speaker 2>that you started exhibiting symptoms when you were just entering puberty,

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<v Speaker 2>and that you were diagnosed many years later with Hydrodenidis

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<v Speaker 2>superativa or HS, and it's a chronic inflammatory disease that

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<v Speaker 2>attacks skin cells, causing inflammation and rastures on the skin.

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<v Speaker 2>There's still a lot that's unknown, and because the symptoms

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<v Speaker 2>can mimic other skin conditions, namely cystic acne, it's often

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<v Speaker 2>overlooked or goes undiagnosed. Can you just share a quick

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<v Speaker 2>recap of how long it took you to get your diagnosis?

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<v Speaker 1>Sure, So, if we count initial symptoms starting at puberty,

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<v Speaker 1>that was probably like eleven to thirteen and is formally

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<v Speaker 1>diagnosed at twenty eight. Symptoms really kicked in right when

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<v Speaker 1>I was around twenty one, like the most noticeable one

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<v Speaker 1>and where I got my first misdiagnosis the first time

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<v Speaker 1>I'd ever seen a doctor. About this fifteen years I

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<v Speaker 1>would say from initial onset, but seven years from the

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<v Speaker 1>time I'd first received medical care and then a misdiagnosis.

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<v Speaker 2>You know what resonates so deeply with going back and

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<v Speaker 2>listening to your episode is the amount of shame and

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<v Speaker 2>guilt you internalized from the onset of symptoms.

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<v Speaker 1>Yeah, and that only reinforces internal feelings that you're already having.

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<v Speaker 1>It pushes you further into isolation. It makes you feel

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<v Speaker 1>like it just confirms almost like your worst fears about

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<v Speaker 1>what's going on with your body, and it's so hard

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<v Speaker 1>to undo that. Even to this day, when I'm talking

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<v Speaker 1>about it with people, I know full well the medical

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<v Speaker 1>mechanisms that go on to this disease. I stay very

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<v Speaker 1>educated rake to date with the research. I know that

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<v Speaker 1>this is not my fault, but I still, almost initially

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<v Speaker 1>when I'm explaining it to people who don't know, almost

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<v Speaker 1>get a little defensive because of that reinforcement of the

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<v Speaker 1>misdiagnosis that I had.

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<v Speaker 2>And it becomes so cruel because you're feeling, in a

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<v Speaker 2>very isolated way, singled out and betrayed by your body,

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<v Speaker 2>and then you're being told that you've betrayed your body

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<v Speaker 2>by not taking care of it properly, and it becomes

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<v Speaker 2>just an emotionally grueling cycle. I should think, Yeah.

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<v Speaker 1>It was difficult and really depressing, and you start to

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<v Speaker 1>understand when we look at the mental health tolls that

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<v Speaker 1>this takes on patience. You really understand that, because again,

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<v Speaker 1>it's your worst fears being confirmed by somebody with a

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<v Speaker 1>medical degree, Like this is not a random person who

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<v Speaker 1>is uneducated about the human body just making assumptions. This

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<v Speaker 1>is someone that you consider to be knowledgeable confirming your fears.

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<v Speaker 1>It's really hard to undo that. It's really really hard

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<v Speaker 1>to undo that.

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<v Speaker 2>You are doing some heavy lifting to undo it, though.

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<v Speaker 2>Can you just talk to me a little bit about

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<v Speaker 2>stepping into advocacy for other people who are dealing with HS.

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<v Speaker 1>I think that's one of the most empowering things that

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<v Speaker 1>I've been able to do, is really talking to people.

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<v Speaker 1>So in the work that we do as advocates, a

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<v Speaker 1>lot of it is connecting with patients, and most of

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<v Speaker 1>the time it's just being brave enough to be the

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<v Speaker 1>first person to say, this is what's going on with

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<v Speaker 1>my body. Because the minute we can as advocates say hey,

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<v Speaker 1>this has been my experience, this is what happened. Can

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<v Speaker 1>you tell me about yours, we kind of free them

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<v Speaker 1>by being the first ones to do it, and now

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<v Speaker 1>they can connect with that and now they're like, this

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<v Speaker 1>is a safe environment, this is why I'm such a

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<v Speaker 1>proponent of the support group model and the magic that

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<v Speaker 1>gets done in the work of the support groups, but

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<v Speaker 1>even just talking to patients and talking to people in

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<v Speaker 1>general in advocacy, the biggest and the hardest thing you

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<v Speaker 1>can do is to just open up and tell your

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<v Speaker 1>authentic story.

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<v Speaker 2>You know, I've always believed that vulnerability ultimately is a superpower,

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<v Speaker 2>and your story illustrates that, honestly, more so than any

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<v Speaker 2>I think we've told, because you went from feeling isolated

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<v Speaker 2>and horrified, trapped in what felt like a living nightmare

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<v Speaker 2>in your bathroom, to speaking openly about it in front

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<v Speaker 2>of conferences. And I'd love to know if you've had

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<v Speaker 2>any kind of response to the episode that we tape together,

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<v Speaker 2>because I just thought your authenticity and your honesty and

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<v Speaker 2>your bravery was staggering.

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<v Speaker 1>Well, thank you for that. It was a really freeing

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<v Speaker 1>and liberating experience for me as well. The feedback that

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<v Speaker 1>we've gotten from within the HS community has been great.

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<v Speaker 1>So many people have listened to it. I've gotten emails

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<v Speaker 1>and responses from it. I was so fortunate to be

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<v Speaker 1>given this platform to just come on and really really

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<v Speaker 1>kind of walk the public through my story. Right, because

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<v Speaker 1>when I speak of a lot of these conferences, they

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<v Speaker 1>are geared toward dermatology and the dermatology community, and I

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<v Speaker 1>get that it's very much in needed. I've done some

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<v Speaker 1>really cool things, you know, in between when we recorded

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<v Speaker 1>to now, and I love educating the community, but the

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<v Speaker 1>general public as well. People who might have this disease

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<v Speaker 1>or think they have this disease, or even have something

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<v Speaker 1>similar can listen to this story and find something to

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<v Speaker 1>connect with. And that has been amazing to look back

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<v Speaker 1>now and say of all the work that I done

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<v Speaker 1>and been able to do this as well. The feedback

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<v Speaker 1>has just been has been really good and really positive.

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<v Speaker 1>Even the comments that people have left them on podcast

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<v Speaker 1>were pretty amazing.

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<v Speaker 2>Absolutely. You know, I don't know if you saw this one,

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<v Speaker 2>but there was a doctor who said that he diagnosed

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<v Speaker 2>somebody with HS after having listened to the episode. There

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<v Speaker 2>was also an email that we received from a woman

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<v Speaker 2>named Cheryl. If you don't mind, I'd love to read

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<v Speaker 2>it to you.

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<v Speaker 1>Yeah.

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<v Speaker 2>She said that after listening to the episode featuring Athena,

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<v Speaker 2>who shared her journey with HS. As someone who unknowingly

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<v Speaker 2>lived with HS for so long, Athena's story hit me hard,

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<v Speaker 2>to say the least. For nearly ten years, I felt

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<v Speaker 2>isolated and misunderstood, not knowing the name of the condition

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<v Speaker 2>that was literally derailing my life. Athena's story reminded me

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<v Speaker 2>that no one is truly alone in this battle. It

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<v Speaker 2>lid a sense of understanding that has been missing for

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<v Speaker 2>far too long. Her bravery in discussing the physical and

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<v Speaker 2>emotional toll of HS has empowered me to navigate sharing

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<v Speaker 2>my experience more openly too. After listening to the episode,

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<v Speaker 2>I shared it with my mom. She had struggled to

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<v Speaker 2>believe and understand what I had been through for many,

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<v Speaker 2>many years. Hearing the similarities in Athena's story helped her

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<v Speaker 2>see the reality of living with HS from a wider

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<v Speaker 2>point of view, and I can pretty confidently say it

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<v Speaker 2>brought us closer together. I think it was a moment

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<v Speaker 2>of validation and connection that we both needed. This episode

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<v Speaker 2>is a must listen for anybody dealing with chronic illness.

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<v Speaker 2>Thank you Athena for your bravery and for helping me

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<v Speaker 2>feel seen and understood. Best Cheryl, Oh my, it's kind

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<v Speaker 2>of hard to fight back to deals with that one.

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<v Speaker 1>Cheryl. That's amazing and I am so honored that this

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<v Speaker 1>has done that for you and for your mother. I

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<v Speaker 1>can actually relate to that. I've told my friends and

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<v Speaker 1>family about this, but my father listened to this the episode,

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<v Speaker 1>and I'd never opened up with him in the way

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<v Speaker 1>that I kind of had with this podcast, right, I'd

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<v Speaker 1>never gone into the details. And my dad actually cried

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<v Speaker 1>listening to this episode. And so, yeah, Cheryl, it's so

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<v Speaker 1>hard right to have gone through this. And then I

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<v Speaker 1>think we're worried right that people aren't going to necessarily

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<v Speaker 1>fully connect with or, like you know, in our inner circles,

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<v Speaker 1>fully empathize with what we're going through because we're so

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<v Speaker 1>used to being minimized with this condition and with chronic

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<v Speaker 1>illness in general. People don't take us seriously when we

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<v Speaker 1>say I can't get out of bed this morning. I

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<v Speaker 1>had a hard time brushing my hair this morning. Everything

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<v Speaker 1>I do is exhausting. My energy levels are just depleted.

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<v Speaker 1>Sometimes we just don't even bother opening up to the

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<v Speaker 1>people that we love because we're just on top of

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<v Speaker 1>everything that we're going through. We don't want to argue

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<v Speaker 1>with them. We don't want to have to tenually explain

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<v Speaker 1>and continually defend as well. So, Cheryl, thank you so

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<v Speaker 1>much for sharing. I'm so glad that this was able

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<v Speaker 1>to help you.

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<v Speaker 2>I mean, it's a wonderful, honestly gift that you've given

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<v Speaker 2>people your bravery and your courage in being so open

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<v Speaker 2>and honest, and again it's a superpower and you're a superhero.

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<v Speaker 2>And talk to me a little bit about your ongoing progress.

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<v Speaker 1>So I am very happy to report that my AHS

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<v Speaker 1>is probably the best to spend in my entire life.

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<v Speaker 1>I am on a combination of medications. It's a new biologic.

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<v Speaker 1>The combination of the biologic and the spernolacton seemed to

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<v Speaker 1>take my HS to like a two out of ten, right,

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<v Speaker 1>like ten being worst one being you know, nothing. It

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<v Speaker 1>seemed to really take it there. We added the birth

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<v Speaker 1>control component and it put me into remission athena.

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<v Speaker 2>That's wonderful.

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<v Speaker 1>Yeah. So I've had a bunch of surgeries to remove

0:13:58.640 --> 0:14:02.240
<v Speaker 1>the AHS. They're still a little bit left. But I

0:14:02.320 --> 0:14:04.960
<v Speaker 1>actually recently went in because I was like, I just

0:14:05.000 --> 0:14:06.920
<v Speaker 1>want to get the last of this taken out and

0:14:06.960 --> 0:14:09.480
<v Speaker 1>taken care of. And they had said that I'm so

0:14:09.760 --> 0:14:12.440
<v Speaker 1>well medically managed that there was no reason to go

0:14:12.520 --> 0:14:16.320
<v Speaker 1>back in and to remove what was left, because it's

0:14:16.360 --> 0:14:17.480
<v Speaker 1>the best it's ever been.

0:14:18.080 --> 0:14:20.160
<v Speaker 2>What are some new things that have changed since we

0:14:20.240 --> 0:14:23.200
<v Speaker 2>last spoke. What are some new interesting things you're taking on.

0:14:23.960 --> 0:14:27.720
<v Speaker 1>So I've lost one hundred and twenty five pounds, wow, Athena, Yeah,

0:14:27.800 --> 0:14:30.680
<v Speaker 1>that's one of the coolest things is just I have

0:14:30.760 --> 0:14:34.000
<v Speaker 1>the ability right to move my body now in ways

0:14:34.040 --> 0:14:37.080
<v Speaker 1>that I hadn't and I have energy levels that I

0:14:37.080 --> 0:14:39.920
<v Speaker 1>didn't quite have before because my body is no longer

0:14:40.080 --> 0:14:44.040
<v Speaker 1>busy fighting something, and so now going to the doctor

0:14:44.160 --> 0:14:45.480
<v Speaker 1>really isn't all that stressful.

0:14:46.040 --> 0:14:50.280
<v Speaker 2>I'm so happy. And I'm sure that your social life

0:14:50.400 --> 0:14:55.160
<v Speaker 2>has expanded with these new ventures as well.

0:14:56.000 --> 0:14:58.480
<v Speaker 1>Yeah, I do so much now with my friends and

0:14:58.640 --> 0:15:01.560
<v Speaker 1>my family. I'm the one now that's like, let's go

0:15:01.640 --> 0:15:05.200
<v Speaker 1>hiking this weekend, or let's do some crazy adventure. Because

0:15:05.520 --> 0:15:08.360
<v Speaker 1>I can move my body both with this disease and

0:15:08.400 --> 0:15:13.160
<v Speaker 1>remission and the combined weight loss, it feels like a

0:15:13.240 --> 0:15:18.520
<v Speaker 1>regeneration of myself without even like the chains of depression.

0:15:19.400 --> 0:15:23.119
<v Speaker 1>I feel better and I feel more confident within myself

0:15:23.240 --> 0:15:26.840
<v Speaker 1>to go out and finally live the life that I've

0:15:26.880 --> 0:15:30.600
<v Speaker 1>always wanted to live, or really in creating a life

0:15:30.600 --> 0:15:31.840
<v Speaker 1>that fulfills me.

0:15:32.600 --> 0:15:35.200
<v Speaker 2>I can't tell you how happy I am for you

0:15:35.280 --> 0:15:39.320
<v Speaker 2>and what a wonderful two year check in this has been.

0:15:39.600 --> 0:15:44.040
<v Speaker 2>So much has happened, and I'm so happy that you

0:15:44.280 --> 0:15:48.040
<v Speaker 2>are on such a wonderful path, and so thank you

0:15:48.120 --> 0:15:51.680
<v Speaker 2>so much for sharing your voice and for agreeing to

0:15:51.760 --> 0:15:54.920
<v Speaker 2>check back in with us, because you're inspiring so many

0:15:54.920 --> 0:15:59.240
<v Speaker 2>more others to find their own and that's a wonderful thing.

0:16:00.120 --> 0:16:03.880
<v Speaker 1>I'm so grateful for this platform and the opportunity to

0:16:03.960 --> 0:16:08.840
<v Speaker 1>tell my story people like Cheryl and Hannah like that

0:16:09.000 --> 0:16:12.080
<v Speaker 1>was the whole goal, was to reach out to patients

0:16:12.080 --> 0:16:15.880
<v Speaker 1>and to educate the general community about this disease. It

0:16:16.120 --> 0:16:19.680
<v Speaker 1>was hard, but I think at the end of the day,

0:16:20.280 --> 0:16:23.600
<v Speaker 1>it's easier to connect with a real life story, which

0:16:23.600 --> 0:16:27.000
<v Speaker 1>is what your entire series did. As opposed to just

0:16:27.080 --> 0:16:31.840
<v Speaker 1>throwing out medical explanations or literature. We are adding the

0:16:31.960 --> 0:16:35.480
<v Speaker 1>human component to it and people will find connection. You know.

0:16:35.520 --> 0:16:37.680
<v Speaker 1>I listened to the other episodes as well in that

0:16:37.720 --> 0:16:39.600
<v Speaker 1>first series, and I'm now just starting to get into

0:16:39.600 --> 0:16:45.440
<v Speaker 1>the second and the power of storytelling and hearing people

0:16:45.560 --> 0:16:50.640
<v Speaker 1>speak their truth is also really inspiring to me. You

0:16:50.640 --> 0:16:54.440
<v Speaker 1>guys have done a great job with allowing patients to

0:16:55.240 --> 0:17:00.600
<v Speaker 1>really speak their truths and in an honest and meaningful,

0:17:01.040 --> 0:17:02.000
<v Speaker 1>impactful way.

0:17:02.920 --> 0:17:06.800
<v Speaker 2>I know my entire team appreciates that, because that's why

0:17:06.840 --> 0:17:10.480
<v Speaker 2>we're doing this, and so thank you for being one

0:17:10.480 --> 0:17:14.320
<v Speaker 2>of those individual voices who again has given voice to

0:17:14.400 --> 0:17:18.119
<v Speaker 2>so many others. I wish you so much continued success

0:17:18.240 --> 0:17:21.199
<v Speaker 2>and I so look forward to our next update to

0:17:21.280 --> 0:17:25.200
<v Speaker 2>see what you're up to then any time. On next

0:17:25.240 --> 0:17:29.320
<v Speaker 2>week's episode of Symptomatic, Scott Colin was in the best

0:17:29.359 --> 0:17:31.800
<v Speaker 2>shape of his life leading up to his fortieth birthday

0:17:32.160 --> 0:17:35.439
<v Speaker 2>when he noticed a small bump on his nose. He

0:17:35.520 --> 0:17:39.720
<v Speaker 2>initially ignored it until the symptom spiraled into a life

0:17:39.760 --> 0:17:44.159
<v Speaker 2>threatening condition, leading to an extended stay in the ICU.

0:17:45.440 --> 0:17:47.600
<v Speaker 3>They're wiring me up and cutting my shirt off and

0:17:47.640 --> 0:17:50.640
<v Speaker 3>getting me on a journey. You've got an ambulance sirens

0:17:50.640 --> 0:17:54.320
<v Speaker 3>going and it was frightening, and that was the moment

0:17:54.359 --> 0:17:56.760
<v Speaker 3>I was like, this is it, this is where I go.

0:17:58.080 --> 0:18:01.679
<v Speaker 2>This has been house calls. Thanks for listening and we

0:18:01.680 --> 0:18:04.119
<v Speaker 2>would love to hear from you too. You can email

0:18:04.200 --> 0:18:08.040
<v Speaker 2>us at Symptomatic at iHeartMedia dot com with thoughts about

0:18:08.080 --> 0:18:11.320
<v Speaker 2>other episodes or to share a medical mystery of your own.

0:18:11.720 --> 0:18:13.359
<v Speaker 2>Until next time, be well.