We asked people how having Alport Syndrome had affected their relationships and friendships. We interviewed single people as well as those with partners and children, and we also asked people about the impact of Alport Syndrome on friendships. People who were already in relationships explained what, if anything, had changed for them and their partners and those who were not in relationships shared their past experiences or described what difficulties might arise for them in the future.
For those with a spouse or partner, most said they were grateful for their support and valued them being there during difficult times such as diagnosis, dialysis and transplantation. For some people transplant and dialysis marked a turning point in their relationship.
Richard Y avoided telling his partner he needed dialysis because he thought she might panic.
Richard Y avoided telling his partner he needed dialysis because he thought she might panic.
Age at interview: 37
Sex: Male
Age at diagnosis: 23
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Yeah, my partner. Without her, I don't know what I'd have done. To start with, when I was diagnosed, she - she knew there was something wrong kidney-wise. I'd got admitted. People came, telling me when she wasn't in - when she wasn't there, people would come and say "You need to start dialysis." And I protected her, I didn't tell her, I didn't want her to think - we'd been together for about three years, and I didn't tell her I'd have to start dialysis. I thought 'what the hell's gonna happen with this?' Together, she'd just moved in with me. It was like, you know, 'is she gonna want to leave me or anything?' But also I didn't want to - I didn't want to panic her. And so [laughing] how we told her was she came in with my aunt one day, and I didn't want to tell her on the renal ward, whatever I could do. Whenever she visited me that first few days in hospital, I'd do anything to get away from it, because it was full of sick people. And I'd seen from my uncle what they had to do, and. Unfortunately renal disease only seems to show you the old people, the people who are just gonna die of natural causes, and the kidneys are giving up, or other, other reasons. And so I - she would come to visit, and we'd go from the hospital, there's a pub across the road, and we'd go and we'd grab a bite to eat instead of me having terrible hospital food. Which is probably not the best idea. Or we'd go into a coffee shop and have a cup of tea. So, I asked - the renal ward was right next to the renal outpatients, so there's a little room, so she doesn't have to - and so I went into there, and I told her. She was like "Okay then, so what does it mean?" So I was like "I need to start dialysis." "Tell me more." So she was like really supportive. "What do you need from me?" And so from that start, she's been fantastic. Mentioned earlier, on a weekend when I wanted to work full-time, I'd leave her and she'd have to - she'd have to do the tidying up. I just didn't have the energy. She'd help, she helps me remember medication now, all the time, to be fair. I have alarms and everything, but I'm one for switching alarms off. And at ten o'clock at night when I have to take medication she will set her alarm as well, to make sure I've got up. I leave them in a little pill box, beside table. Morning. In the evening. And she'll get up, I've seen her walk round the bed with the light on the phone and make sure I've taken them. She went "Have you taken them?" So I'd hate to think how many doses of medication I would have missed, and caused problems for. She cooks, cleans, it's like my own little [laughing] personal assistant, when I don't have the energy to do it. I've had a transplant but there's days when I'll still be completely wiped out. And she, yeah. Thankfully she, she's a terrible cook but due to cheese toasties and steroids, I've managed to plenty of weight on. But she - yeah, she helps out massively.
Michael Y’s partner wanted him see a doctor and get a diagnosis.
Michael Y’s partner wanted him see a doctor and get a diagnosis.
Age at interview: 25
Sex: Male
Age at diagnosis: 24
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She - once she sort of knew the family history of Alport Syndrome, she was like same as my Mum, just [laugh] telling me to go to the doctor, and stuff like that. I don't know why I didn't, probably just laziness, to be honest [laughing]. Which in hindsight is so, so stupid and terrible of me. But at least I, I did get diagnosed. But my partner's been supportive. She obviously read everything as well, once it happened, but. I mean, I think everyone's got something wrong with them they need to monitor, and things like that. So it's just, just a hoop you need to sort of jump through, and that we need to remember. Just oh yeah, in the future I'll probably need to go on dialysis or get a kidney transplant, so. Because it's not physically there yet, I think we're both sort of just trying to get as much stuff done now, as well. Just because travelling will be a lot harder then than it is now [laugh].
People spoke about how they explained Alport Syndrome to partners. Some had told their partners or spouse early on in their relationship, but others left it until they needed hospital treatment. Most people saw the need for potential partners to know how Alport Syndrome could be handed down to the next generation, so wanted partners to be clear of the risks. Several people took their partners for genetic counselling when they contemplated starting a family. Debra said she wanted her partner to know what he was “getting himself into”. Many people said the genetics of Alport Syndrome impacted their relationship and was a factor in their reproductive choices. Alison said that before she started dialysis, her previous partner hadn’t really understood what it was about and how serious the condition was.
Alison used to be self-conscious about the dialysis tube in her stomach but says her partner has been very understanding.
Alison used to be self-conscious about the dialysis tube in her stomach but says her partner has been very understanding.
Age at interview: 33
Sex: Female
Age at diagnosis: 20
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It was - you're quite self-conscious. I was single when I started on dialysis, so you're always self-conscious of your body when you have this tube that comes out, it's not normal. And, but he's been absolutely perfect, and really understands everything. I maybe didn't so much go into Alport syndrome but I maybe explained more about the dialysis and how that works. But one thing we have spoke about is how Alport Syndrome is hereditary. So there's gonna be a day when we're gonna want to have children. And that's something that slightly worries me, because there's a fifty-fifty chance that I could pass this on to, if I have any sons, then I could pass it on to them. And then it's more serious in males, so that's something else that does worry me. Whereas I do know and hope, because I have coped so well with it, that they will too. But then I've not had the, the addition of the loss of hearing and eyesight, so.
Those who were single hoped any future partner would be understanding. Alison said that she wouldn’t want to be with somebody who wasn’t understanding. Patrick said that if he had a long term relationship, “they’ll have to understand it cos if they don’t then tough, you know. It's a part of me now”. Some younger people hadn’t thought about a relationship or felt it was an “abstract idea”.
Alan discusses how Alport Syndrome affected a previous relationship and his feelings about future relationships.
Alan discusses how Alport Syndrome affected a previous relationship and his feelings about future relationships.
Age at interview: 49
Sex: Male
Age at diagnosis: 19
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Yeah, I have to be focused on myself. You know? What's best for me. And I still do it now. You know? But it, it does, it does play a big part in your normal life, yeah. Relationship-wise, and things. I feel pretty much set in my own way, you know? In my own ways. Yeah.
Did you find that - did it impact relationships and friendships?
I mean, I was married. I was married for sixteen months. But that, that split wasn't nothing to do with the illness as such. But I think now, you know, I'm still a single man. Divorced, if you like. It's affected - I'm not looking for a relationship, you know? I'm not - and don't get me wrong, I've been on a few dating sites and stuff [laughing]. But I still get this doubt in my mind, am I ready? Can I cope with it? Can I? You know? Because it's a bit like 'look after number one'. You know? I certainly couldn't take - even though when I was married I had two sons. Not mine, but my ex-wife's. And, sometimes I wasn't fit enough to take that responsibility. You know, was too tired. "Oh, let them get on with it." You know? That was my easy, 'I'm too tired to cope with it'. You know, that - I suppose that does have a negative, you know, aspect. But no, I mean, I've had, when I started dialysis again in 2014, I did see the renal counsellor, or the renal psychiatrist.
Okay.
Yeah. And she was very good, you know, I told her all - all about my relationships, how I coped day to day with the dialysis. And it, I would recommend anyone, you know, with the problems like myself to, you know - don't be proud. You know? Do it. No skin off my nose. Because there was things I could say to her, that I couldn't say to my family, you know?
As Alport Syndrome is rare, people said they sometimes found it difficult to explain to partners as well as friends because most people had not heard of it. Sometimes people explained it as a kidney disease or condition instead of saying it was Alport Syndrome, as they felt that was easier for others to understand. Katie and Sarah said that they felt friends didn’t really understand what the condition was about, even though they were fine about it.
Sarah and Katie feel that it’s not hard for others to accept their condition but it’s hard to explain.
Sarah and Katie feel that it’s not hard for others to accept their condition but it’s hard to explain.
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And what about sort of - the Alports, does it affect things like your social life, or relationships, stuff like that?
Sarah: I was in a relationship about eighteen months ago. And she was my friend at the time, so I was talking - sort of talking to her like through the process, because we'd been friends for a long time, so she sort of knew when I was being diagnosed. But then I still like sat down and we had like a long like talk about it, in case we ever decided to have children. But I think it's not hard for people to accept it, it's just hard to explain it to them, what that actually means, so.
So she'd been through it, actually quite -
Sarah: Yeah. With me.
- so was quite aware of what was happening, and.
Sarah: But like new people that I talk to, like if the topic comes up and I'm like "Oh, I've got Alports." They're just like "What's that?" And it's like a half an hour conversation to explain to them. And they don't really understand what that would mean, because they haven't really been through it, so.
And what do you think about sort of like relationships in the future, about like sort of telling somebody, a partner?
Sarah: I feel like it would be a difficult thing to tell someone, because it's not like a hundred percent guaranteed that your child would have it. But like it is still an issue that could be there, and quite serious if you had like a boy who had it. So I think it would be difficult to tell someone, but I would tell them.
What do you feel about it [Katie]?
Katie: Well, I mean, if I decide to have children, I'd definitely tell them quite early on in the relationship, because I think they have a right to know. And I think - but it doesn't really affect my social life at all. Because my friends know I have it, but they don't really understand it particularly, but it doesn't really change anything.
Amanda is very open about her son’s condition with other parents.
Amanda is very open about her son’s condition with other parents.
Age at interview: 39
Sex: Female
Age at diagnosis: 33
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Do his friends know about Alports, or? Parents, or?
They know - they know - the parents, yeah. Aha. Some of the parents know obviously that - I'm open with them. I always say, you know, "[my son’s] got a kidney condition called Alports." If I just say "[my son’s] got Alports" they don't have a clue what I'm talking about. So I always say "[my son’s] got kidney disease, and its name is Alports." And they're like "Oh, right. Oh, I didn't know that." And, so yeah, there is - more, more parents I would say than children. A couple of his friends that I've said to - but I don't really know if they know what it means. Like I've said "Oh, [my son’s] got something wrong with his kidneys." And if I'm obviously saying something if he's had an accident, "You do know that [my son’s] got something wrong with is kidneys?" And a couple of friends go "Yeah." And I think 'oh, I don't know if they know what it is'. I think they're still a wee bit too young. Because they're 9, coming up for 10.
Deborah’s previous boyfriend rejected her because of Alport Syndrome, but now her fiancé is fine about it.
Deborah’s previous boyfriend rejected her because of Alport Syndrome, but now her fiancé is fine about it.
Age at interview: 36
Sex: Female
Age at diagnosis: 13
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Has it affected sort of relationships, and things like that? You mentioned -
Yeah. Just, it affected one relationship in the past. He basically made a comment - because he read up on the X-chromosome one, and said he didn't want to be with someone who could pass on something to a future son, who would then have kidney failure. And then I realised, you know, he's not a nice person really [laughing]. And when I started dating my fiancé, like and realised that I quite liked him, I was open and honest, told him about, and he was perfectly fine. And when I had my DNA tests, they've said to me in the past - when I meet someone, if I want them to have a DNA test as well, to see, in case they would be a carrier, I'd be more than welcome to have that. But, yeah. So I've mentioned that to him, but I'm not really too concerned about him having, having a DNA test, because I think it's so rare. And also I know with my own life, it doesn't really affect me - I have a normal life still. I don't think I have to sort of like worry about that [laugh].
Some people felt that Alport Syndrome could make life tougher for their partner. They shouldered more responsibility for family and children and they had to cope with someone who was often tired and had periods in hospital. Angela said that she thought her husband might now see her as someone with a health condition compared to when they first met. For one person we spoke with, having Alport Syndrome was one contributory factor in the breakdown of their marriage.
Cynthia says her husband is amazing but that being her carer has taken its toll on his health.
Cynthia says her husband is amazing but that being her carer has taken its toll on his health.
Age at interview: 65
Sex: Female
Age at diagnosis: 21
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I mustn't forget my husband. Because we've been married forty years, and he's been amazing. He's always there for me. Yeah. Unfortunately it's taken its toll, and, you know, think he's suffered from stress-related illness. Yeah.
Yeah, do you think it's been difficult for him then?
It is very difficult. It's worse for the person who's the carer, or the onlooker, I think. All the things have happened to me, there has been rather a lot.
And my husband's always been there for me. But you know, it's just been constant. There's no let-up. You know? I know I'm lucky enough - a lot of good things have happened. Like, you know, I'm lucky enough to have a transplant that works. And my cancer hasn't come back. So, that's a good thing. But it's just so wearing. You know? You get very tired. Mmm.
Donna’s partner tends to forget about her condition because she doesn’t look ill.
Donna’s partner tends to forget about her condition because she doesn’t look ill.
Age at interview: 47
Sex: Female
Age at diagnosis: 3
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Less red meat. And less carbs. You know? And more fruit and veg. Whereas I love my potatoes [laugh]. But yeah, so. And it, it's hard because my partner is - he just loves his red meat, and won't eat fruit or vegetables. So it's really hard to try to decide what to have in the evenings, to - you know - to help me. You know, and it's just getting to the point where I'm thinking we need to eat separate meals, because - you know - what he likes, which is what I've been eating over the last so many years, isn't good for me. He would eat minced beef every day of the week if he could [laughing]. You know, and I need to limit the amount of red meat I eat. And eat more fish.
And does he sort of understand that it's obviously to do with the Alports, and?
And I do have to find myself regularly reminding him. That's the trouble. That's the one thing that I find with Alports/kidney disease, is because they can't see the disability, people easily forget. You know, and if I get a cold or whatever, like I've got now, its like "Oh, you've only got a cold." Whereas like do you know what, it's really, really taking it out of me. But they just, people just don't see that.
Some people had partners or friends who had donated a kidney to them, which they felt enormously grateful for. Steve’s good friend donated a kidney to him, “I'll never be able to thank him enough for it”. Neil donated one of his kidneys to his partner Diane. Some people spoke about how a transplant affected their relationship and allowed them to get married or have children. One person, however, spoke about how her husband’s blood group was not a good match for her son in the future and her son didn’t want to consider a cadaver donor (from someone who has died). She worried that this would seriously test their relationship in the future if her husband couldn’t donate.
Christine met Paul at work when he was on dialysis so she knew and accepted his illness from the start.
Christine met Paul at work when he was on dialysis so she knew and accepted his illness from the start.
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Christine: So, we both met at work. So we worked at the same place. And as I say, Paul was on CAPD when we met. You used to use that system, didn't you, for dialysis. So, yes. And you - the funny thing is, Paul said if ever you got the transplant [laughing], you would ask me to marry you. And then a little while later –
Paul: Thinking I'd have a few years. Six months later –
Christine: [Laughing] a little while later.
Paul: [Laughing] or it wasn't even that.
Christine: [Laughing] no. Along came the second transplant. So yeah, we got married in '91. In '91. So I've always known Paul with, you know, all the problems that Alports brings. And dialysis, etc. But then you had your transplant. And we had quite a number of years. So, how many years?
Paul: Fourteen.
Christine: Fourteen years. And that's when we had our family then. So, Emma and [my son] came along in those years, didn't they, so. But we've always had to deal with the Alports, haven't we. And it just becomes - in your family, it just becomes the norm, sort of thing. You know, it's there, and you just - just deal with it, really. It's hard to explain, you know. So many people will - if they say "What is Alports?" And you explain, and dialysis, and things. And they're sort of a bit blown away with all what goes on around it. But when you actually live with it, you just - just get on with it, really. Yeah.
Neil felt happy to give his partner Diane a kidney so she could get her normal life back.
Neil felt happy to give his partner Diane a kidney so she could get her normal life back.
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Can I ask when you made the decision to donate? I just heard that you were the donor?
Neil: Well it's pretty much when we found out, when we found out that, you know, live donation was a possibility. You kind of go 'oh okay. Oh, you know, I'll donate, you know.' I think actually I was initially thinking 'I probably won't be a match anyway.' Because you think it's gonna be rare. And then they sent me for some tests, and they said, "Oh no, you're a match." "Ah. Ah, okay."
Diane: [Laughing]
Neil: "Okay, let's go with this then, yes." And her family - you know. It's actually better to come from a family member if possible, but her family just didn't have a great –
Diane: My Mum's weren't working [laughing].
Neil: Your Dad's had one removed.
Diane: My Dad's only got one.
Neil: For another reason, not the same reason.
Diane: Yeah. He had a lump on his, had it removed. Yeah. So yeah, he - but yeah, my Dad's like "Oh, I'd give you mine. Really, I want to give mine, but." [Laughing].
Only got one, aww.
Diane: "Yeah Dad, you've only got one." [Laughing] "Think you need it." Yeah.
Neil: So, and then - then they just -
Diane: There wasn't anyone else really, was there.
Neil: No. And then they sent, obviously for me they did loads of tests to make sure I was okay. I did have hypertension as well, actually. But they put me on blood pressure tablets for a year, pretty much, which is why we had to wait so long really, to get my blood pressure to normal. So once that was normal, they said "Yeah, you're fit and healthy otherwise. You know, you don't have any problems in the family either, there's - you know - nothing that would prevent us from doing it, so." So yeah, went ahead with it in July 2009, was it?
Diane: Mmm.
So how did you feel about being a donor, and afterwards, and?
Neil: Yeah, I mean, just really good. Just really happy to give Di, you know, her normal life back. I mean, we wouldn't have been able to - you know - have those two kids without it, so - without doing it, so. It just seemed the right thing to do, and it means we could get on with our life really.
Robin met his wife to be before he had kidney failure and they married after his transplant.
Robin met his wife to be before he had kidney failure and they married after his transplant.
Age at interview: 62
Sex: Male
Age at diagnosis: 26
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I’d met my wife to be before my kidney failure was diagnosed. And it was then subsequently diagnosed. I went on dialysis. We planned to get married at some point and if a transplant had come through by the time we got married all very well and good. That would have changed other things. We my transplant came along in 1980. We got married in 1981. So I think I was dialysing from around 1978 sort of, you know, about 2 years, 1979 something around that time.
Did your wife know about, all about your Alports and… then?
Yes she did, yes she did. It was once, once I knew about it then she knew about it and it was at that time we had explained what kidney failure meant and we also again at that time. I think it was before we were married but certainly yes it would have been before we had this initial, very early genetic counselling around having children and what that might mean.
And for an X chromosome it was, you can’t pass it on if you are a man. Again that was as far as the research had gone at that time. I think some of these more, more unusual variants were not necessarily identified at that point. And it was a. I think some sort of case that if we had, had had girls there was, they would be carriers as I understand it. And I think, rightly or wrongly we took the view that by the time if we had a girl by the time that she had reached her 50 or 60s the idea was quite, I think quite strongly, that medical science would have moved to a degree that there may be less of an impact on their life than there would have been on, on mine as a man with a more severe condition. It was a view which as it happened two boys and the issue for us ends with me.
People spoke about the importance of friendship, but not everyone wanted what Kevin called “hand-wringing”. Most people wanted friends to carry on socialising with them as they always had done and not necessarily treating them as different.
Kevin used to go rock climbing with friends during dialysis and was glad they weren’t ‘overly sympathetic’.
Kevin used to go rock climbing with friends during dialysis and was glad they weren’t ‘overly sympathetic’.
Age at interview: 42
Sex: Male
Age at diagnosis: 6
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I tried to do different things. I mean, I would - I would - When I look back, I was still trying to do some activities. So I used to go - I was still rock-climbing [laughing]. You know - mental, when I think about it, but. I'd taken up rock-climbing with some friends of mine in my early twenties. And I was determined not to stop. So I couldn't, I couldn't forward-plan, so I had a couple of friends who would go rock-climbing. I'd aim to go with them. Sometimes I could, sometimes I couldn't, depended how I felt. But when I look back, I was really grateful, because my friends weren't overly sympathetic. My friends would just take the mickey. Which was far better than having lots of hand-wringing and people, you know, overly sympathetic. So yeah, so my friends would just rib me about it. I remember [laugh], I remember once I'd go halfway up a cliff face, I felt nauseous. My friends were just laughing. It was like, "Oh, here he goes again." Which was exactly what I needed. Because I just needed people to be normal. And yeah, you don't want - well, I didn't want people being overly concerned or, you know, worrying about me. I just wanted my normal life.
And so what I'd do would be, I would dialyse before we set off. I'd tape all my catheter up, to make sure it was pretty stable. And then - we'd go rock-climbing quite locally. We wouldn't go too far. And if we were gonna go out for the day, I'd just take a, like a dialysis fluid with me, and then stick it on the roof of the car. I've never told my nurse this, because she would have freaked. But just stick the dialysis bag on the top of the car. Dialyse cold. Usually you warm dialysis fluid up, so it's like body temperature before you put it in. But it's cold when you put it in and you haven't warmed it up, you do know it. But it was that, or stay at home. So I wasn't gonna stay at home. So yeah, just dialyse in the car, and then go and do some more climbing, and then go home.
Patrick’s friends were fantastic about it when he started wearing hearing aids.
Patrick’s friends were fantastic about it when he started wearing hearing aids.
Age at interview: 17
Sex: Male
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Oh it was, it was fantastic, and my friends were fantastic about it as well. They were all really excited that Paddy had found, you know, this new gadget. And honestly I remember my eight year old self being really excited about it cos they're sort of a novelty. You don’t see many kids wearing hearing aids these days and my eight year old self, I think really enjoyed it. He was, he was quite proud of the fact that he was unique in this way.
So, your friends reacted very positively?
My friends were really great actually, they were helpful and stuff like when you're in a group right, it's very, very hard as a person with hearing aids because you can't really focus on multiple people, you have to, you know be very aware of who's speaking; you have to look at them and you have to read their lips. My friends were absolutely ready to help me with that – you know stand in a circle so I could see everyone – that sort of thing, it was great.
Some people said they only told close friends that they had Alport Syndrome. Some people said they didn’t like to talk about Alport Syndrome with friends as they felt that was unnecessary and a possible burden (see People’s attitude to Alport Syndrome and their outlook for the future). Alison said she had a great circle of friends and a “good social life” and celebrated the anniversary of her kidney transplant with them by going for afternoon tea and prosecco. Jayne said that her son’s friends knew about him wearing hearing aids and got his attention when he missed something. Robin said that his friends know he is deaf and tap him on the arm when he hasn’t heard something.
Not everyone chose to be upfront about having Alport Syndrome. Michelle said that her son’s friends didn’t need to know as he looked no different to his friends. Some people mentioned that when they told friends about things like dialysis and transplantation they were shocked. Michael Y recently told his friends about his diagnosis and they were shocked. Some mentioned that their friendships had changed over the years and friends had become more aware and understanding.
Alan doesn’t want to burden his friends about Alport Syndrome even though they’ve become more understanding over time.
Alan doesn’t want to burden his friends about Alport Syndrome even though they’ve become more understanding over time.
Age at interview: 49
Sex: Male
Age at diagnosis: 19
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I think friends now, as I've got older, and they've got older, they're more - they're more listening, more understanding, than when I was a teenager. You know? They seem, they appear to be more caring, and more considerate. You know? But, you know, I have friends that say, "Oh, how are you doing?" And I'll say, "I'm fine, don't worry about it, don't worry about it." "I haven't heard from you in a while?" I said, "Well I'm still here." So, I - you know. But as much as they, they, they seem to have an attentive ear, you don't want to burden them with it. You just want to carry on with your normal life, you know?
But at the same time, it is a reassurance that they do ask.
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