Wilf: It’s important to have the same person, I think. It gets a little bit, little bit hectic being exchanged from one GP to another.

Jago: Yeah.

Wilf: And the familiarity, seeing the same person, the same face, updating them. It’s

Jago: Yeah. Because you can kind of build a relationship with them, and you’re comfortable talking to them about anything.

Wilf: Yeah, yeah.

Jago: Like any queries, any problems that you may have, related to the topic. So that’s a really helpful thing, if it’s just one person. Whereas if you’re seeing multiple GPs or something, or you’re being transferred, it’s quite difficult. Because there’s a lot more going on in the process.

Jago: I think it’s

Wilf: It’s great.

Jago: Yeah, I think it’s a really good thing. Because we have these information days where a lot of people – because it’s such a rare disease, their GPs might not know much about it. So when they come and see other people with it, then they get knowledge from that, and they pass on knowledge to them, and it’s just really good because everyone just comes together. They see people in the same condition. And they, they might realise that actually it’s not that bad. Because we had a little boy who thought that he might never be able to play football again. But it turns out that that’s really not gonna happen, because he really – you definitely can play football for a long time, maybe not during his transplant process. And maybe not as much through dialysis if he has that. But it’s not going to affect him that much. And football is something that he really loves. So he was great. He was really happy by the end of the day. Which is really good, so.

Wilf: It’s good for reassurance as well, because

Jago: Yeah.

Wilf: – the odds of you walking across a person with Alports in the street is so little, because it’s such a rare disease. It just reassures you that, you know, lots of people go through the same thing. And it’s not just you. They’re all in the same boat.

Jago: I think we know that it’s not going to just suddenly happen. The kidneys’ function is just basically decreasing and decreasing, so it’s able to do less things for your body. So cleaning the blood more effectively, and controlling your salts, and stuff like that. Bringing back water into your body. All these things that is going to happen less effectively, and might even just stop happening altogether. Which is then when you have to have your transplant. Because you need all these things to either live, or live healthily. So I think that’s what we understand. But then we can’t – even doctors don’t know when it’s gonna happen. It’s impossible to predict, because it’s entirely random. But all that we know is that we can put it off for as long as we can, by remembering to take our pills, by being fit, by eating well. That’s kind of our understanding of the kidney failure.

Wilf: It’s a rare disease. There’s not much info on it. It is rare. So there’s not – well, there is understanding of it, but not as much as you would like, I guess.

Jago: My first real memory of having Alport Syndrome was when I was about 11, when I got my first hearing aid. Because I think I was diagnosed far earlier, but I just don’t really remember it, and my parents kind of kept me out of the knowledge of it for quite a while until they couldn’t, when I had my first hearing aid. Which was a little bit of a shock, but it’s – it’s fine. And didn’t get the second one until a few months later.

Wilf: I was given hearing aids at the age of 7. And they didn’t really suspect anything further. So I had hearing aids for quite a few years. And then my brother had hearing aids as well. And by the time I was 10 or 11, they realised that, you know, something wasn’t right. It wasn’t just my hearing. And they kind of linked that to Alport Syndrome. And that’s when I started taking tablets and things, and going to the sessions, and stuff like that.

It was a big change. Like having hearing aids for the first time, it’s really weird. Because like everyone sound like robots. But after like one, one year, or like two years, just don’t realise it any more. But it was, it was a big shock at first, like just suddenly having hearing aids, having these tablets, going to sessions and stuff like that. Yeah.

Jago: Yeah. It was a massive shock, because it suddenly got you a lot of attention. And also it was a, a big change. But as Wilf said, you kind of sort of forget about it after a while because it just becomes second nature, putting it in. You no longer forget about it. And it does – when it’s in, you don’t notice it, you just realise that you can actually hear stuff.

Wilf: Mmm.

Jago: But the hearing loss itself, it wasn’t that much of a shock, because it comes on so slowly.

Wilf: Yeah.

Jago: It doesn’t really affect you that much. Like if you think back, then you remember that you can hear quite a lot without your hearing aids, but it – over a course of a few months, you can’t tell any difference at all.

And you mentioned there that you got a lot of attention. Can you explain a little bit more about that?

Jago: Just peer members in class, just suddenly getting interested in it. Because you’ve never had it before. It’s quite a cool little gadget, so. Some of them might have thought – maybe a little bit jealous, and thinking that you have supersonic hearing.

Wilf: Little recorder things.

Jago: I didn’t

Wilf: Oh. They had like sort of – the teachers put on those neck things. And then like a microphone. That’s a pretty cool gadget.

Is that like a hearing loop?

Wilf: Yeah, a hearing loop. Yeah. But at first when people start asking about it, you feel very

Jago: Slightly self-conscious, yeah.

Wilf: Yeah, self-conscious. But now we’ve got like these new hearing aids, which you can barely see. They help a lot. But after like a couple of years with hearing aids, you – self-conscious isn’t something you take notice to any more. So, yeah.

Jago: They have – well, mine have four different settings. So they have just a general setting for like a younger generation, that picks up a lot of everything around you. And then my second setting is for a slightly older generation, where it’s picking up everything in a closer proximity. My third one is for picking up Bluetooth devices, like headphones, or my phone when I’m making a call, so I don’t have to have it on loudspeaker. Just so much more helpful, and a lot more private.

Wilf: Really cool gadget.

Jago: And then fourth one is a loop system, so if there’s a loop system on a speaker at like a public talk, a festival, or someone has one of those neck loops, then it comes straight into the ear.

Jago: One of my favourite sports is hockey. So that’s, that’s quite active. A lot of core muscle there, like being used to get low and hit the ball. And then I also like clay pigeon shooting, which isn’t quite as active, I guess. I mean, just standing there holding a gun. But then me and Wilf both have pull-up bars so [laughing], so that’s a little bit of exercise there as well.

Wilf: I do football. So that’s like your cardiovascular fitness. And I do climbing, because that’s more your muscles and stuff. I’ve always done – I’ve always done football. Since like age 5. And then I started climbing about two years ago.

That’s cool, yeah. And have you done that because of the Alports? Or do you think you’d do that anyway, or?

Jago: I think I would do that anyway. It’s – I love playing sport. It’s just a really fun thing to do. The adrenalin. And it means that even if you get hurt, you don’t feel it. It’s just really fun. Hockey, rugby. Clay pigeon shooting. Football with some friends. Me and Wilf go climbing from time to time. Yeah, it’s really fun.

And if you had like a sort of message for other people with Alports, what would you sort of advise? Or what would you say?

Wilf: Be healthy. That’s about it. Because being healthy helps with everything. Like your diet will help out your – exercise will help out.

Jago: Yeah. Mmm.

Wilf: And you’ll just have kidney things later. Just take your tablets every day. That’s all you can do, really.

Jago: Yeah. If you can remember all that, then you’re just putting it off for so much longer, and you’re just gonna be better off. Because then you have time to prepare, and you’re gonna be – obviously you’re gonna be like stronger, you’re gonna be more ready for it. You’re in a better position.

Wilf: It’s inevitable.

Jago: Because the healthier you are, the better your recovery, the later it actually happens. The more you remember your pills, obviously the later it is the better. Because obviously the earlier you have it, then there’s more chance of having to have more xxx which is also not a very nice process. Even just having one. So the less you can have, the better.

Wilf: It is inevitable, whatever happens, that you’re gonna have a transplant.

Jago: Yeah.

Wilf: It’s just a question of when it will be.

Jago: Yeah.

Wilf: It’s just everything you do is just gonna put it off. And that’s, that’s what you want.