Giving sequence to series of interviews with women with Turner Syndrome (TS) and relatives that create content about the syndrome on digital platforms, today’s conversation presents a different dynamic from the previous ones. Not only because the focus is not on the personal experience of the interviewee, but also because her aim is to help and give voice to other patients. The content of the interviews is part of my PhD’s thesis, which addresses the communication experiences of patients with TS on the ambience of mediatization. This study is part of Lacim. Remembering that the aim of these interview is to show the different relations that exists on the mediatization of health process, and how these dynamics are part of the self and disease’s elaborations. For more information about the research, please access the first part of this series.

Today’s interview is with Emily Seymour, from England, and who was born with TS. In 2021, Emily started a podcast – Turner Syndrome Talk and Tea - in which she talks with women with TS and their relatives. With a group of pre-selected questions, she presents the different perspectives related with the syndrome. Her show has audience in more than 25 countries and has almost 3000 views.

Lacim: Why did you decide to create the podcast Turner Syndrome Talk and Tea?

Emily: I created it because I wanted more awareness on Turner Syndrome, because it is that not well known anywhere, more places, generally is not well known, and I wanted to create it because I just wanted to feel less alone. Not that I had an issue with that, but it is nice to talk to people. And then I thought this might have been what I have loved when I was younger, like maybe [my] teenager years.

Lacim: What are the objectives of the podcast?

Emily: Create more awareness, let people have insight into everyday of Turner’s. Because we get a lot of medical stuff, which is fine, because it does that, like it is part of that. We don’t get much real-life everyday stuff, that you can apply for maybe.

Lacim: Do you think it is important, not just talk about medical stuff, but the life with, TS, the quality of life, and other things that we do besides TS?

Emily: Definitely. Like for me, I had to change my tablets, when I was 16. I was quite sensitive to progesterone, which is in contraception, which they use for hormone replacement sometimes. And like then, at that age, you probably wouldn’t feel like empowered to change medication, I really was angry all the time. Like, looking back I was just, I probably didn’t show as much as I think, but in my head, I was a horrible person. So, it is nice to know that it is not just you going through experiences, and like you can go against doctor, and ask for a different thing.

Lacim: Why did you decide for a podcast, not other kind of media?

Emily: Because of less pressure, less pressure to look good. Like if I did a YouTube, I would think like: Would I have to wear makeup. Like the amount of times that I have done my podcast recordings my hair is out of place. Like it is less pressure and I think is more accessible.

Lacim: I don’t know in England, but here in Brazil just now we are talking more about podcasts, and listening more to podcasts. Are they common in England?

Emily: Yeah, it’s really common in England. And with the podcast you don’t have to have wifi to listen to it. You can download it, if you are working you can listen to it, so you can listen to it anytime.

Lacim: Why did you decide to tell other’s people history and not just yours?

Emily: So, I maybe discredited myself, but one story, just my story alone would be boring I feel. And may be quite repetitive. Because you had to dig to find things to say, and I just love listening to everyone else stories. I just sit there and like trans, and I forget to record, I have not done that, but I am worried about that because I am so in it that I am worried about forgetting to record.

Lacim: Do you think that you learn different things about TS listening to other people’s story?

Emily: Up to now, I didn’t realize, well I didn’t think about how impactful infertility would be to everyone. Like I knew it would be impactful to the women with Turner’s and girls, but thinking for partners, I have had some perspective on that. And just in general, everyday life scenarios that I didn’t think would affect me, but it has affected other women.

Lacim: What role do you think communication have for patients and families with Turner Syndrome?

Emily: Connection, take and see themselves in other people, like you are never going to be alone and everybody knows that to some degree. But it is another thing hearing about it, hearing your story from another person.

Lacim: What is the importance for the families to have access and see different experiences about Turner Syndrome through digital platforms?

So, maybe somebody who is just about to go to their daughter’s puberty could listen to an experience of someone who has already gone through puberty, like what to look up for, things like that maybe.

Lacim: I was thinking now, on your podcast you bring different perspectives, not just from patients, also from mothers, fathers… what is the importance of listening to this whole kind of experiences, not just the patients? Because sometimes we just focus on patients’ perspectives, or mothers’ experiences. But your podcast is beyond that.

Emily: It is interesting, isn’t it? Because when you think of a diagnosis, you think just a person, and like you said maybe the mother. But I think it is important to get all perspectives, because it is just… it affects everyone you know, like the whole family: your brother, your sister, your father, aunt, uncle maybe.

Lacim: What are the challenges of being a host, recording and sharing the content of your podcast?

Emily: Forgetting to record, it is not a massive, but it is a big thing for me to think ‘Am I recording?”, so I have to check if it is recording 2 or 3 times. And I just I have learned things now like naming things better, so you know, like ‘dad Seymour on editing’, ‘dad Seymour edited’ broad then just ‘dad Seymour’. And I like to make my Instagram look really aesthetic pleasing, so trying to find just content for there.

Lacim: Do you have any challenges during the interviews?

Emily: Sometimes I have to push for an answer maybe, not all the time. Specially if I don’t know the person, that can be a little bit tricky. If I don’t know much about them, then I can’t say if they have started a fundraising if I don’t know them, I can’t say ‘oh I know you did this’ so that can be a little bit tricky sometimes.

Lacim: About the questions you ask on your podcast. Were they difficult to elaborate? What was your process to establish that group of questions?

Emily: I got both mom and dad for advice. I said ‘I want to start a podcast, what questions should I do?’ we like looked it all together. And obviously ‘do you have Turner’s?’ that should be like the first question. Biggest challenge and most positive experience that’s come hand in hand, really. Once I thought asking ‘what is your biggest challenge’, I thought ‘what is the most positive?’

Lacim: This is one thing I found interesting about you podcast. You always ask a positive experience with TS. Because generally people see a negative thing about it.

Emily: I didn’t want to start with the positive. I wanted to star with the negative, and then go to the positive. So, it is not the last thing you remember or say. I try to balance, which is quite nice.

Lacim: About the people you interview. Some people get in touch with you, but do you also invite some people to be on your podcast?

Emily: Yes. If I know one in particular or if I can think someone that I know from society, I will invite them. But don’t wait to be invited, just get in contact. Because I had Hailey, she is on the support society, she is my go to, like recommending who I should have on. Because I don’t know every single person on the society, and there are so many people with Turner’s who aren’t on the society as well.

Lacim: And about the mediatic process: are you learning during the process of creating the podcast? Or did you make a research before?

Emily: I should have. But it was mostly within the first couple of months after launching it. I should have researched before and done proper launch.

Lacim: About the process of recording and episode: how is it after the person gets in touch with you or you get in touch with the person.

Emily: I record in an app, I used to send to a person who professionally edited it, but that was quite expensive, so I found a free website that did thar, which is really good. So, I send the episode in advance, so if they want to listen to it, because sometimes, like I know for me, on my first episode of the podcast I couldn’t remember what I said, and I listened to it on back and forth, thanks I could listen back.

Lacim: What strategies do you have to promote interaction with your audience?

Emily: I do some posts on Instagram stories, I send out little things saying if you would like to be on my podcast DM go and contact. And on some, I do not all the time, but on some episodes, I say at the end ‘I would love to know your feedback’ whatever it is, because I would.

Lacim: Why do you think it is important to promote your podcast on Instagram?

Emily: It just means another connection point, I think. It just gives you just to hear someone than you might have an idea what they look in your head, but when you see that photo on Instagram you are like ‘ah ok’. I mean like, it could be a silly little thing, but it just put a face to name. It makes you feel more connected to that person, even though you barely know them.

Lacim: How is the dynamic to answer the comments of the followers on Instagram? Do you try to answer every comment?

Emily: Yeah. Definitely. I think that is very important. I don’t get that many comments, so it is quite ease to handle. Like, there was woman with a recent diagnosed baby, and she didn’t know the society, and she was from the US. So, I tagged the US version of the podcast on the Instagram, and helped her to find the right people to talk to, which is amazing.

Lacim: About the podcast and the Instagram. Do you that one completes de other as communication platforms? In your case, of course.

Emily: I think they do. It helps to reach a wider audience of people. I have to return to Facebook, that I have recently launched as well, so that to reach even more people. I think so, because I think that if I just did the podcast alone it would be tricky. The more you are out there, the more visible you are, the more people will know about it.

Lacim: What others strategies do you use to make people interested about your podcast?

Emily: So, I did this fun thing. In UK we have a building company called Turner’s. And it has lorries. And one day I was traveling somewhere, and there was this lorry called Turner’s, so I took a picture of it and photoshopped my podcast logo onto it. That was quite fun: ‘promotion’, it really wasn’t. Fun little things like that. And I ask every guest if they could promote my podcast, not the podcast, promote the episode, if they like to, because I am sure their family and friends would be really proud.