Jago and Wilf

Age at interview: 17

Age at diagnosis: 11

Brief Outline:

Jago and Wilf are cousins. Both were diagnosed with Alport Syndrome as children when they began experiencing hearing problems. They both try to keep healthy and plan to go travelling after finishing their studies.

Background:

Jago and Wilf are full time students. Ethnicity: White English.

More about me...

Jago and Wilf are cousins. They were both diagnosed with Alport Syndrome around the age of 11, although Wilf had been wearing hearing aids since the age of 7. Wilf’s brother also has Alport Syndrome and so does their uncle. 

Jago and Wilf both found it a bit of a shock getting used to changes after their diagnoses, such as wearing hearing aids, taking tablets and having to attend regular check-ups. They found they got “quite a lot of attention” at school when they first started wearing hearing aids as friends were curious about their new “gadgets”. Jago started taking regular blood pressure medication at the age of 13, but experienced headaches, so his doctors changed his medication to reduce these side-effects. He has recently started taking a new blood pressure medication and has not noticed any side-effects so far. Wilf says his experience of medication was “quite similar”, however, if he forgets to take his pills it can give him “puffy legs” and a swollen face. 

Both Jago and Wilf visit the GP every 3 months and the hospital every 6 for regular check-ups including blood pressure checks and measuring their height and weight. Both of them exercise regularly and try to cut down on salty foods, such as marmite, as their uncle told them the fitter you are, the faster you recover from a kidney transplant.

They do not know when they might have a transplant, but they worry about it, as they feel it is “inevitable”. Jago finds the idea of a transplant a bit nerve wracking, but is more scared of being on dialysis. Wilf says “It's just a question of when it will be” but he doesn’t want to think about it too much, he just wants to “get on”.

Both Jago and Wilf don’t talk much about Alport Syndrome to their friends, as they find it can “ruin the mood” if you’re at a party or outing. However, Wilf finds he can talk about it in Biology classes at college, as his friends are interested in his knowledge about genetic conditions. Jago and Wilf have family members who run a national charity and support group for people with Alport Syndrome. They find attending information days useful as there is not much information about Alport Syndrome. They also get to meet other young people with Alport Syndrome and can hear about their experiences, which can be reassuring. 

Jago plans to study engineering in the UK and wants to work as a civil engineer and go travelling with friends. Wilf wants to study mental health nursing and take a gap year. They think both of these careers should be flexible and allow them time off for the transplant and doctor’s appointments. Their message to others with Alport Syndrome is to stay healthy, exercise and keep taking regular medication to prolong kidney function.

Jago and Wilf talk about their kidney function decreasing in the future.

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 and Wilf clip describe when they first got hearing loss

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.

Jago and Wilf talk about how they feel about their peers noticing their hearing aids.

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 and Wilf enjoy hockey, clay pigeon shooting, football and climbing all of which they do for fun.

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.

Jago and Wilf feel that a healthy diet and exercise is important and can delay the need for a transplant.

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.

Jago and Wilf feel it’s important to see the same GP to build a relationship with them.

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 and Wilf talk about meeting others at an Alport UK information day.

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.