People with children with Alport Syndrome expressed a mixture of emotions. On opening the letters stating their sons had Alport Syndrome, Lucy felt devastating guilt and Amanda said her “whole world had crumbled”. Neil and Diane said they were disappointed when they found out both their children inherited Alport Syndrome but said, “We'll cope with it, we've been through it, we know what it's like”. Lucy said she felt “stupid and irresponsible” that she had put her son at risk but said, “You come to terms with the fact that it's there in the background but it's not something you think about all the time”. People spoke about not regretting their decision to have children and adapting to their futures.
Jayne says in the beginning you think everything’s bad but then you get used to it.
Jayne says in the beginning you think everything’s bad but then you get used to it.
Age at interview: 40
Sex: Female
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I think it was probably better that I didn't know, for me. Because in an ideal world I wouldn't have wanted to pass it on to my children. I know my sister's having this heartache now with her daughter. Because although her daughter's still really young, she's got it in the back of her mind, at what stage is she going to discuss it with her? Whether she does anything about it, if she decides to have children herself. And I think she's quite pleased that she can use my children as examples of what life's gonna be like, sort of thing. Because when you sort of get the diagnosis at the beginning, you think 'oh, this is it, everything's bad'. But once you, once you get used to it, they just run around like normal. And, you know. I say to them all the time, because we go to the hospital, and they're like running around like manic, and I'm like, "You're supposed to be poorly" [laughing]. But, you know, they're full of energy. Nothing ails them, apart from their ears. At the minute, anyway. So I think it's nice for her to see that, and like my niece will see that. Because they're very similar in age, and she'll see that they've grown up, and how they've dealt with it themselves, so hopefully it will sort of help her in the future, if she does decide to have any herself. Mmm.
Amanda describes her fears and worries about the future for her son and her.
Amanda describes her fears and worries about the future for her son and her.
Age at interview: 39
Sex: Female
Age at diagnosis: 33
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It's hard sometimes. It is very hard. Because you don't know what the future holds. You hope and pray that it's - For myself, I suppose I hope and pray that I'm gonna be well enough to help my son. And am I still gonna be here to help my son? Because that's I think to myself, I want to be fit and well, to try and support him through something that I know is gonna happen. I don't have any control of this happening. It is definitely gonna go to that procedure, whether I like it or not. And I hope that I'm around to help him go through that. That's a worry as well, because obviously it was always about him, and how - you know - oh, I need to think about him, how's his future gonna be? And then obviously until somebody makes you aware that, "Well, you need to be here to help him through that as well." And I'm like 'well, yeah I suppose I do'. So that, that itself is a bit concerning, that - you know - hope I'm still gonna be here to help him through. Which hopefully if I behave myself, and look after myself well, then I'd like to think it would be. But, who knows? Who knows? You just don't know. But yet again, I always put him first. And it's always - always thinking of him, you know, how is the future gonna be? Is he gonna be unwell? Is he gonna meet somebody? Is he gonna get married? Is he gonna have kids of his own? Then there's that worry. You know, is he gonna pass the gene on to his own children? Which if he has boys, then we're laughing. If he has girls, then it's a totally different story - it's a fifty-fifty chance. So yeah, there's that as well, that you - in the future generations, this is gonna get passed on. And then he needs to think about that himself, when he's got - if he gets a partner, and decide on children, and then - you know - he's gonna be fit enough to get a job? You know, how's he gonna do in career? And how's he gonna do in school, and? What happens if it happens when he's at high school? You know, how's that gonna affect his education? So everything - everything is sort of a constant worry, I think, that you - you try not to look too much into it, but sometimes you don't have an option, you have to think about it, you have to look into it, and you need to think 'well, I don't actually know'. So, are you torturing yourself by not knowing, and wondering about these things? Or do you just try and live for each day and just be normal? Be a normal family, treat him normally. And if he does wrong, he knows he does wrong, he's not wrapped in a cotton wool ball - he's treated like a normal child. Yep, I feel absolutely devastated for him and I can't believe it, but to us he's just our son, he's just normal. We need to remember that. And then people on the outside don't treat him any differently, because they can't see an issue. They don't know. They don't know anything. Look at him, you wouldn't even know there's anything wrong with him. He looks fine. Look at him, he's fine. You know? And he is fine. He is. Until that day comes that things do change. And then your whole life changes. His whole life changes, our whole life changes. And that's gonna be hard to take. Because obviously at the moment, you know, I work part time and I work around [my son] at the moment. You know, would I have to give up my job? You know, things like that. Who knows. I don't really know how - if it's gonna be the dialysis at home, depending on his age, or will it be - you know - having to take him to hospitals for the dialysis machine three times a week? You know, even the thought of that, you know sitting on a machine for hours. You know, is he gonna be well after it? You know, is it gonna affect the other days that he isn't on a machine? All that kind of worry, I suppose. You just don't know how the future's gonna hold. So sometimes it's easier not to think about it, and live for day to day, than dwell on it too much and try and ruin the good times that you've got.
Dee tries to keep positive for her children and says Alport Syndrome is something you adapt to.
Dee tries to keep positive for her children and says Alport Syndrome is something you adapt to.
Age at interview: 51
Sex: Female
Age at diagnosis: 48
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If I'd known I had a genetic illness, obviously it would have - there would have been some thought involved with it. But I think now I've got the illness, lived with it, I'd have reacted differently. So I'm glad it's happened this way round really, because if I'd had the choice I might have made a silly decision. Whereas looking back it's not something that - I don't want my children to go through this, don't get me wrong. But at the same time, if they have to do, I know it's not - you know. I said to my daughter about it, "I'd rather be here than not be here." I thought that's, you know, what counts, isn't it. And I think that's what keeps me stronger on dialysis as well, because whenever I feel down, I go 'hang on a minute, don't want them to see me like this, you know, because there could be a time when they're going through the same sort of thing'. So I stay positive about stuff, but. It isn't, it isn't really that bad. It's just - best way to describe it is, it's just something you've got to adapt to, which is a little change in your life really. And if you just treat it as that, I think you manage alright.
People spoke about their concerns for the future (see also people’s attitude to Alport Syndrome and their outlook for the future). For Lucy and Jayne, their main concern was their sons’ hearing. Angela felt that research on giving medication early on was encouraging, should her children develop symptoms. Richard Y felt that medicine was making “massive advances”. Steve felt that with current research on Alport Syndrome, the potential to “stave off” kidney failure until later life could change everyone’s views on family planning. People spoke about their own children’s future family planning: Steve hoped his daughter wouldn’t be put off from having children having seen him raise her with Alport Syndrome, whilst Paul and Christine supported their daughter Emma to get IVF/ pre-implantation genetic diagnosis (PGD). Richard X spoke about having a conversation with his daughter in the future about IVF and sex selection (see also Alport Syndrome and reproductive choices).
Neil and Diane are hopeful about future research and treatment for their children.
Neil and Diane are hopeful about future research and treatment for their children.
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Neil: So they both go there [hospital] once a year, for a check-up. Just to sort of check their - yeah, but they don't expect anything to happen until end of primary. So 10, 11. For [our son], at least. But they'll check him anyway, just to make sure. And just keep an eye on him. And there's obviously new research coming out all the time, that if you - and especially kidney, that actually if you put them on blood pressure tablets earlier, it can hold off kidney problems longer, and there's all sorts of research going on about how best to treat kids you know have, you know, got it. So , you know. And by the time - we're hoping by the time he gets to an age where he needs a transplant, that you know, there's so much research in artificial transplants, and rejection – rejection… are getting so much better, and so , we'll see. I mean with the brilliant reports on Facebook about people who've had transplants for thirty years?
Diane: Mmm. Yeah thirty, thirty five years.
Neil: What's the record? What was the record? Thirty five years. Because they say when you - you know - they say from a living donor, you can expect it to last fifteen, twenty years, if you're - you know - all being well. But, you know, there's reports of people having the operation in the eighties, and still having their kidney now, so. It's brilliant, isn't it. So hopefully it'll go on a lot longer than the fifteen to twenty, it'll be - you know - she won't need another one. But only time will tell, I guess. And with the kids, yeah. We just - you know - obviously medical advances will come along a long way, when they - when they need one, hopefully. So it'll be even better.
Richard Y hopes when his daughter is older that medicine will have made advances.
Richard Y hopes when his daughter is older that medicine will have made advances.
Age at interview: 37
Sex: Male
Age at diagnosis: 23
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So that's it. So it's just unfortunately - well, unfortunately - because she's the best thing that's ever happened to me, but [daughter’s name] will be a carrier. And then she's got that choice then. Which I spent a lot of time thinking about. If I didn't have kids, from my family there'd be no more Alports, that'd be it. But we just thought in forty years’ time when she might think about a family, maybe fifty, [laughing] - she'll get married when she's forty five - that we don't know what might have changed, that way. It could be something that they might offer IVF, that kind of treatment. Or there could be not a cure, because it's a genetic condition, some missing collagen, but there might be something that can be done. Medicine made massive advances. And so, yeah. It feels tough that we've passed this decision onto her, but I'm sure that things will change between now and - in the next twenty years, things will, things will move on. And yeah, she might just have a little girl, and decide to call it quits [laughing].
Parents spoke about explaining Alport Syndrome to their children. Lucy said that she will “drip feed information” to her daughters when her son develops hearing problems. She thought they would probably “spot things before they were happening”. Neil and Diane felt their children were a “bit too young to understand at the moment”.
Jayne says her and her husband explained things in simple terms to their children from the beginning.
Jayne says her and her husband explained things in simple terms to their children from the beginning.
Age at interview: 40
Sex: Female
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Yeah. I've, me and my husband sort of sat down and said, "How are we gonna deal with this?" Because they knew that they kept going to the hospital for their blood taking. But I think children just take it as it is, don't they. So I thought back about things that I'd been told when I was younger, and I thought you just - life is so simple when you're young. And I thought rather than let them get to teenagers or whatever, and tell them this bombshell, I thought I'll tell them. So we put it in really simple terms, and we just said, "Look, your kidneys don't work very well. So it makes your ears not work very well, and your eyes. So that's why you've got to wear your hearing aids. You've got to go for your eyes testing. And the doctor checks your kidneys." And they've been absolutely fine with that. And then we've also said like it's a bit of, it's a bit of a way to get them to eat healthy. But we've said, you know, "You might have to have new kidneys when you get older. So, you keep running around playing and doing your sport, and eating your fruit and vegetables, because if you do that, that'll keep your kidneys healthy longer." So that's the way we've done it. And they haven't questioned it at all. So that's what we've just said. And I mean, my youngest one were a bit like, "mmm, whose kidneys am I gonna have?" [laughing] Sort of thing. But we says, "Oh well, you know, you just might get mine, or." I mean, I don't know about, don't know about myself because I've got the Alports. I haven't even gone down that road yet. But we says, "Oh, you might get one of Daddy's kidneys, or - you know - Aunty So-And-So's, you know." But they've just, "Oh yeah, right." That's perfectly normal. And because we've told them right from the beginning, so they've just accepted it. Yeah.
Angela describes her daughter’s understanding of her mum having Alport Syndrome.
Angela describes her daughter’s understanding of her mum having Alport Syndrome.
Age at interview: 40
Sex: Female
Age at diagnosis: 10
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And she'll come with me, and she'll just like, you know - I'll say to her like I said last week, you know "I'm going to have my eye checked." And she's just a bit like "Ah, that's - how is your eye, Mummy? Is your eye okay?" Because to her, it's just kind of like - I suppose it's just her norm, that Mum goes and gets things checked.
She's not quite old enough that she's now worked out, "Well, why does Mum and not Dad? Or not other people?"
I don't think she's quite at that point. Although she does know that - I said to her at one point that I was, you know, I'd had a new - I have told her that I had someone else's kidney, and she knows that I have tablets. [my son’s] too young. But they both know that the tablets, you know, are basically for Mummy, and they'll make Mummy better but they'll make other people ill. So, and people can't have them because it'll make them feel poorly.
So they both understand that. So she is actually, she's actually quite sweet and supportive.
Ah.
In a six year old way [laughing].
See also Alport Syndrome - family life, hobbies and interests.
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