Alport syndrome: family life, hobbies and interests

Family life and family relationships were extremely important to many of the people we talked to.

Family ties are important to many because Alport syndrome is often inherited genetically through parents and/or grandparents. Alport syndrome can also affect the relationship between family members such as siblings. In these ways it often links generations together in powerful and sometimes painful ways. We spoke to individuals as well as families and carers to understand the impact on family life, and the importance of hobbies and interests.

People talked about how their family values and ‘family culture’ affected them as they grew up (see also: People’s attitude to Alport syndrome and their outlook for the future). Some spoke about their childhood memories and several recounted particular phrases by family members which had stayed with them throughout their lives. Paul said that his mum always told him “You’ve got to work harder than the next person, to keep level with them,” which influenced his attitude to work. Debra said her dad was very private about his condition and she too herself doesn’t like to make announcements and tell people about it.

Those whose families were positive often wanted to create the same family culture with their own children and families. Lucy said her family’s attitude towards Alport syndrome was to “normalise” it, and that was the pattern she wanted to follow with her own children. Patrick and Kevin both said that Alport syndrome had been normalised in their families which they found very helpful. Alan said that he grew up with a “pick yourself up” attitude instilled by his mum, which he tried to follow.

Angela talks about the different kinds of support she gets from her parents and her husband.

Age at interview 40

Gender Female

Age at diagnosis 10

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My family and my sister and my parents, yeah. They’re probably the main people. In different ways, I think. From all of them. [My sister], she’s the one who’s a doctor, she’s very sort of hands-on. She’ll always be there if I need her to be there.

Is that your sister?

Yeah, my sister. And I remember at one point after I’d had one of the – every time I had the operations, like a general anaesthetic, I then puked a lot. And the first time I puked, like I remember [my sister] reading my hospital chart saying they’ve given you – I can’t remember, something like gristine (?), or something. It was basically a, a cheap anti-sickness drug. Which they give everybody in the first instance. So the second time I had it, I remember saying I don’t want that because I puked all the time, so I need to have basically – I think it was called Cyclizine, the next one up. And it’s obviously the guidelines say give her the one which is cheaper and works with most people, but I knew that I wasn’t, I wouldn’t have if [my sister] wasn’t – so she’s sort of practical like that and has got the knowledge as well, but she’s quite caring. And my Mum is very kind of nurturing and caring. And she like comes and makes me cups of tea and stuff. And, you know, cleans up and things. And my Dad’s very practical. So they’re quite a good pair. And [my husband], as I say, very practical in terms of – not practical in terms of making cups of tea [laughing], but practical in terms of getting on with things, and being positive. So I suppose he’s probably like in terms of keeping the mental attitude.

Think that’s probably slightly ingrained in me anyway because I think of mainly my Dad more than my Mum in terms of being positive and get on with things. But [my husband], is actually kind of more, more just kind of get your head down and carry on, but actually like “It’s fine, just carry on and be happy about it.”

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Sarah and Katie are glad that they have each other and their mum for support.

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Sarah: I think we have talked with [our aunty] about it before.

Katie: Yeah.

Sarah: But I think – she doesn’t have children, so she’s not really in with that. And I think Mum’s brother, [name], he does have children and we used to see them a lot. And it was weird because they don’t have Alports or anything, so they’re not really – like it’s mainly just me, Katie and Mum that it affects. So they don’t really know how to talk to us about it.

And how does that feel, being – sort of it’s just like the three of you?

Sarah: It’s nice that I have Mum and Katie. It’s nice that we have each other.

Katie: Good that there’s three of us that have it, not like just one of us or anything.

Sarah: Yeah.

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Others talked about feeling isolated, and a few people didn’t feel very supported by their families. Sometimes people said they held quite different views to other family members. People spoke about seeking support from other people in similar situations through social media or charities. Others got support through their religious faith or through friends and relationships.

Donna didn’t get much support growing up but felt that later on connecting with others online helped a lot.

Age at interview 47

Gender Female

Age at diagnosis 3

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I’ve – yeah. I’ve just had nowhere, nothing to go, nobody to go to. And that is, to be quite honest that didn’t help. When we was talking about depression, now thinking about it, that didn’t help my depression as a youngster. I know I was at least suffering from depression from age 14. I know I went for tablets, and I went to get knives to self-harm and things. So I definitely think that having the Alports would have obviously been on top of everything else playing on my mind, because I had nobody to ask, didn’t understand. So yeah, that would have, in that respect, as a youngster, put more – made me more depressed, because of the lack of knowledge.

Yeah, so you were telling me about like when you were growing up, that you didn’t get much information.

Yeah. Didn’t have a clue.

So where did you sort of get your support from then?

I didn’t have any support.

So it was just –

Yeah. Yeah. First lot of support I got was when [hospital] put me in touch with a genetic counsellor. That was when I sort of started to like understand that I’d actually got a condition that, you know, it’s not good. You know, because up until then it was just the norm, and didn’t know any different. But then obviously when I realised I was going to be having to make difficult choices in the future. But again, that was, only a couple of meetings with them to explain to me that it’s hereditary and how it can get passed on. And then, and then I just went away with nobody to talk to. Which is – today, with Facebook and all the groups, and internet, is absolutely amazing. I think it’s fantastic that there’s other people out there, that you can talk to and, and compare notes. You know? You realise you’re not going mad. You know? Because you do just – when you’re isolated, you just – you do, you just think you’re going mad, you know? I’m – you know, ‘why do I feel like this? Why do I not feel well? What, what’s wrong?’ But with other people out there that you can just get it out with, and they say “Yeah, yeah. No, I understand that. You know, this is my experience.” And I think, I just think it’s fantastic. It’s just so, so helpful.

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Sammy’s faith has helped her with Alport Syndrome and difficult family circumstances.

Age at interview 36

Gender Female

Age at diagnosis 17

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But my Mum’s social life was – and my Dad wasn’t very nice person. He was kind of abusive, but like verbally abusive. And sometimes physically as well. And you just felt like, Mum would just – she was, she had like a lot of courage. She was, you know, she never sat down and cried about anything. And, she was more courageous than me, I would think. But she just went with the flow.

And, and I think now – my Grandma used to say, you know, my Grandma’s been through tough relationship with her husband, like my Grandad. She’s been such a strong woman. She’s always been trust in god. And I think that’s what got my sister through. And then even now, we were just talking about it the other day, we’re like “Well Grandma used to be right, trust in god. God has a better plan for you.” Even though you might think this something nasty. Say if I like lost my child, maybe it’s god’s plan. Because if I had that child and my kidneys fail, how would I cope? You don’t know. And anyway, my Mum passed away at a young age – even then, when she passed away, when I was about 19 and I used to my uncle – you know, talking about her, and I’m like “I’m glad she died.” And he’s like, “How dare you say that?” And I’m like “Because she’s away from pain.”

The pain, the physical pain she had to go through to be on dialysis, and the day-in, day-out, her daily routine, her life, you know, the family she lives with. It’s emotionally hard as well, which no one really sees that side, because – you know – the Pakistanis, they ignore all the emotional side of things, and they just look at the financial, and look if you’re fit or not fit. And because obviously they do know, because they’re the one that’s given you that headache, they’re the ones that keep putting you down. Even now I feel as if I’ve got no, nothing to give.

But with the Alports, I mean, with my health, I think it’s just that faith. And that – just that little patience, and other little things, and niggly things like your Grandma and your Mum used to say. You know, even though you might not – my Mum used to read the little religious books, and even though she used to give example, like maybe you don’t have to know the – you know – the holy book inside out, or come out with, you know, the quotes. As soon as that – maybe you don’t have to like – But just be humble. Just be a good person. Just live your life simply. Because that can translate to being a good person. But then I believe that that’s not just a religious thing, every religion has that. You know?

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People often recalled memories and significant events happening in their families, for instance Mariam remembers feeling very isolated when she started experiencing hearing loss and her cousins didn’t play with her. Karen said that her brother Anthony bottled things up and didn’t always talk about his feelings, and sometimes resented how Alport syndrome held him back in life. For those with parents who had Alport syndrome, they recalled memories of growing up with dialysis machines in their homes or getting “the call” for a transplant.

Frances remembers her dad being in hospital and how upset he was when he realised she also had Alport Syndrome.

Age at interview 35

Gender Female

Age at diagnosis 16

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Because I just remember seeing my Dad hooked up to machines, seeing all the struggles, and all the things he had. Like he had peritonitis and stuff, he was in hospital, we thought he was gonna die, and he was really ill like loads of times through the dialysis stage. And I thought ‘oh my, this is me, I’m gonna spend the rest of my life like that. And then I think the thing they don’t think about as well is because it is genetic, it’s passed on. My Dad – having to go home and tell my Dad that I’d just been told that I’ve got the same thing as him was like a ton of bricks on him, because he was devastated. He was crying, and saying how it was his fault, and why would they do that, it’s – he would never do that to me, he loved me so much. And I felt absolutely terrible, because he was blaming himself for something that was totally out of his control. He didn’t know anything about it when he had me, you know, me and my brothers. And then suddenly he felt as if this was the worst thing – you know, how could he do that? And then it wasn’t until I got a bit older – I’d never ever blamed my Dad, never ever blamed my Dad. And then when I got older, I realised, you know, how it did feel. Especially when I had my daughter and she was fine, and then when I had my son – I think I got complacent, I just thought ‘he’ll be fine. You know, ‘my daughter’s fine, it’s fine. And then when he wasn’t, everything came crashing round about me. I was devastated. Absolutely devastated. But I just know now that things are completely different, and his future is a lot brighter than, you know, certainly my Dad’s would have been – you know – if this had been like when my Dad was his age. It could have been devastating. But now he goes to hospital and has regular appointments, has check-ups, takes medication. Kidney function’s doing really well. The hospital’s delighted with his progress, they say that everything’s really good, just keep doing what you’re doing. And they’ll keep monitoring it. And as long as I think you stay on, on top of it, and you do monitor it, then you know, there’s things you can do to slow it down, and stop – you know – the progression actually to renal failure.

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Frances vividly remembers a brilliant family holiday because her dad could also come too.

Age at interview 35

Gender Female

Age at diagnosis 16

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I knew the doctors’ names, I knew the nurses’ names, I knew everybody’s names, because that was normal to me. And not having holidays was normal as well, because we could never have any, because my Dad was always on dialysis, and always the bag, or. You know, it wasn’t until I think – he was still on dialysis – I think I might be 10 or 11, and we went to a big like kind of caravan park place, you know. One of these big chain ones. But the British Kidney Patients Association had organised that. And they had a unit that my Dad could go to, and go on the dialysis. So he could go on holiday, and be there with us, and then go away and do dialysis in the actual place, and then come back. And he’d like – and I always remember that, because I thought this was the best thing ever. Because it was such a big deal. Because we had never been like on holiday since my Dad had been sick.

And how was that holiday?

Brilliant. I just remember just loving it. And, but it wasn’t just me, my Mum, my Dad and brothers, like my aunty came and my cousins came as well. And so it was like a big massive, you know, family thing. And my family – especially like my – that’s my Dad’s sister who’s passed away – they were inseparable. So they were always, always together. So like that’s, that was really nice, that we have memories of them, you know, being on holiday together. You know, and just enjoying normal family life. And going to the seaside, and going to the entertainments at night time, and watching people up singing, and like beauty contests and all the rubbish that they have on these holiday parks. But when you’re wee you think this is the best thing in the world. And, you know, and I think if I took my two there, they would be like “Right, okay.” You know, and bored senseless. But then, that was the best thing in the world to me because it was just normal and it had been what I’d been dying for, for so long. Because everybody else is away on holiday and doing things with their family, and going to the cinema and doing this, and my life wasn’t about that when my Dad was on dialysis. It was just about – even going out with my friends, doing whatever I wanted to do. But if I wanted to do something with family, had to be planned really well because didn’t have a lot of time. Couldn’t go very far. We only had that four hour gap in between, you know, the bag. You know, and it was like – and then, you know, I’ll maybe go to the shop or come back, but even then he couldn’t do anything because he was so tired and so drained, it – you know – and even then it was like if I was wanting to do something with my Mum, because my Mum didn’t want to leave him. So we’d need to get somebody to come and be in the house with him. So, so I think that – missed out on that when I was wee. And you don’t realise that actually. I don’t think I’ve actually realised that until I’ve actually started to sit and talk about it, because that was just normal to me.

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Debra remembers her dad having dialysis at home with help from her mum and the difference the transplant made to his life.

Age at interview 33

Gender Female

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I mean, I don’t know any different, obviously. But, you know, yeah. I mean, my – so, when I was a child, my Mum and Dad had the home dialysis. So they had the dialysis unit in the house. Which, in the eighties, was a monstrosity. You know, it was an entire room in the house. So she used to do the dialysis for him. Obviously I don’t remember, because I was a toddler, you know, my son’s age. But then I have an absolute fear of needles. So I can assume that that’s where it comes from, you know? [Laughs]. Seeing all these needles everywhere.

But I just always knew that my Dad was on dialysis. He dialysed three days a week. And, and that was it. And then he got a phone call to say he was having a transplant. I was 12. And that was like a huge thing. Because you get the phone call, and it’s like “You’re having it today.” You know, “We’ve got a kidney, you’re – you’re coming into hospital now.”

So I do remember going to see him, and – you know – obviously he’d been through a major operation, and. You know, it was a life-changing thing for him, because – you know – I had known somebody who – And then you just – you only know what you know. You know? You don’t think about it.

Someone who drinks half cups of tea. Someone who, you know, as a guy who doesn’t drink pints, you know, drinks little vodkas as alcohol. It just limited fluid intake. And I never questioned it.

And then suddenly he had a transplant, and was eating and drinking all these things that he’d never had before. Put on loads of weight, because of all the steroids. And, you know, it was a massive – it was a massive thing in his life. You know, it was really life-changing for him.

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People were grateful for the practical support from partners, carers and other family members. Jayne used to go to appointments with her sister which she found reassuring, and Debra said her dad would sometimes come with her to appointments when he was alive. Cynthia said that having Alport syndrome had taken its toll on her husband who now had a stress-related illness. She said, “It’s worse for the person who’s the carer, or the onlooker.” Paul said that after his third transplant a “cloud lifted’ for him and his whole family and he wasn’t “grumpy anymore”. Parents often spoke about worrying about their children and spoke about the guilt they felt in passing on the Alport gene.

People said that they were often trying to balance everything and home life could be very busy. Amanda spoke about running back and forth to the hospital and that at one point her son had appointments with educational psychology, at his renal clinic, hearing clinic and an eye clinic. Robin spoke about how when he lived overseas his wife and him juggled work, caring for their children and appointments in the UK. Angela said, “I suppose I feel a bit like I’m trying to balance, you know, work, hospital, kids, house. Husband.”

Hobbies and interests

People living with Alport syndrome enjoyed a range of activities, interests and hobbies, including many different sports, volunteering, travelling and holidays. People spoke about doing these with their families and friends and often wanted to continue normal life.

People said that having Alport syndrome made them want to live life to the full and also sometimes to revaluate their lives to do different things. Michael said that Alport syndrome acted as a “catalyst” for him doing lots of travelling and holidays now before he gets kidney failure. Mariam said that she did a lot of drawing when she was on dialysing at home before her transplant. Alan and Kevin both talked about studying and doing courses whilst doing dialysis. Several people explained how important it was to keep busy and maintain outside interests while waiting for treatment.

Alison enjoyed being able to walk the West Highland Way after her transplant.

Age at interview 33

Gender Female

Age at diagnosis 20

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I quite enjoy going hill-walking. So, being in this part of Scotland is quite convenient. One thing that I always wanted to do was walk the West Highland Way. Which is ninety six miles from Milngavie in the, near Glasgow. To Fort William. So after the transplant I thought ‘right, I’m gonna do it. And my partner and I did it in October. And I thought ‘what can I do? I don’t want to raise money for charity, because I just feel there’s a lot of people doing that at the moment and people are continually being asked for money. So I thought I would try and promote organ donation. So I contacted Organ Donation and got a couple of t-shirts, some balloons, and some leaflets to hand out to fellow walkers on the way, and to leave at B&Bs that we stayed on, on the way. So, yeah it was really good, and we were really lucky with the weather as well, so it was beautiful sunshine, so. I think that made a big difference. Had it been raining the whole time it wouldn’t be so much fun [laugh].

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Amanda and her family enjoy riding bikes and visiting castles, museums and having days out together.

Age at interview 39

Gender Female

Age at diagnosis 33

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Oh, we do everything together. We go on bike rides. We go on walks up to the local pond, and we’ll feed the ducks. We actually, we’re the Pan Piper, we go out on the bikes and we’ve got like five kids [laughing], not just ours – other kids from the estate. He invites his friends on their wee bikes. We go, and they – both of them like, they’re quite into army and war things. So we go a lot to the castles. We’ve got a kind of membership, that we can go to the castles any time – obviously pay for that monthly. So they like going to the castles and having a look at all the history. They’re quite into history, the two of them. I just go along [laughing]. I go with the flow. I’m like ‘okay then, day out. So yeah, they like going to the museums. We go to the aircraft museums, we go to air shows. They love going to their holidays. Bowling. Cinema. Just the usual kind of things that kids like to do, you know what I mean? Swimming, and all – all the things – there’s nothing that affects us. We don’t, we don’t stop doing what we like to do. We, we still do our normal things. The only time that it affects us if like we can plan for something, but if [my son] takes not well – or if he takes his headaches, then that can change things.

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Deborah feels she carries on living life normally despite having Alport Syndrome.

Age at interview 36

Gender Female

Age at diagnosis 13

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This may sound silly. I did actually ask the doctor, “Am I okay to drink alcohol with this, and taking my medication?” And they were like “Yes.” So I do carry on socialising completely normally, like with all my friends. No one would ever look at me, I think, and go “Ooh, she might have some rare condition.” But then again, you never know what anyone sort of like has. As long as you’re going out there with a positive outlook. But yeah, I don’t let it affect me. I went off travelling when I was younger. That was before I was on the medication [laughing]. I had a really good time there. The only difference since having, being on the medication is that when I then did like a month’s travelling, is that I got a letter from my doctor to explain why I was carrying so many drugs on me [laughing]. In case I got stopped at border control or something.

Yes. Yeah.

But yeah, I don’t let it affect me. I’m not going to sit at home and worry about, I’ll carry on living life anyway.

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Younger people often talked about their career ambitions and sometimes how their plans had been influenced by having Alport syndrome.

Since her transplant Mariam decided to follow a career in health and social care because she wants to help others.

Age at interview 21

Gender Female

Age at diagnosis 13

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Well at the moment I’m studying health & social care. Because the thing about art was, it was just a hobby. It wasn’t what I wanted to do as a career. I remember that I used to always like enjoy helping people, and like I used to be quite good at giving advice, as well. And I kind of wanted to do something in the healthcare. But I didn’t know what. Like, you know, I couldn’t really do like a doctor thing, because I wasn’t that smart, to be honest. So that’s when I started looking at health & social care. Like-. I don’t know how to describe it, but I didn’t want to be the one cleaning up people’s mess, sort of thing. But I wanted to be the one that’s like helping them getting better. So like being some sort of advisor. So I quite liked the interest of being a psychologist.

I also remember after I had the kidney, I was more grateful with life and stuff like that. And I was like, you know, I want to – I want to help people, make them love life again, and stuff like that. So I think that’s what has sort of encouraged me to go there.

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Katie and Sarah want to take gap years and travel before they start their careers.

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Sarah: I’m going to be doing my new course, which is going to be two years at least. And then I’m planning to take a gap year. And I want to go to Japan at some point. So I’m going to hopefully save up for that. And then after that I’ll probably find a job doing painting and decorating somewhere, so.

Katie: Well, I’m doing some work experience… And then after that, once I’m 16 I’m going to get a job and start saving, hopefully move out. And I’m applying to be on a gap year as well, I’m going to travel to like Africa, and hopefully work with big cats and stuff like that, and go on safari. Get some work experience. And then hopefully have a career with big cats.

Is that what you want to do?

Katie: Yeah.

What sort of like career?

Katie: Well I kind of want to work like hands-on. So like working with big cats, like hands-on work though. So not just like a normal zoo-keeper would. Like training them and stuff like that.

Ah, okay. Oh, interesting. Sounds amazing.

Sarah: She has big ambitions.

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People frequently spoke about travelling and holidays, and how this was important for their enjoyment and relaxation. Several people said that insurance could be more expensive if you said you had Alport syndrome. Michael said he typed Alport syndrome into his insurance quote and the price quadrupled. People also spoke about arranging dialysis abroad and having to prepare for this.

Patrick describes what he did to prepare for a trip to Honduras and says he wants to visit many other places.

Age at interview 17

Gender Male

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Yeah but I’d got like an airtight bag for my hearing aids because of course it’s incredibly humid; you don’t want water getting in them cos it blocks them up. I’d got filters, I’d got batteries, had my little, my little kit of like pills , hearing aid batteries, hearing aid filters, hearing aid cleaning kit. It was yeah; no but honestly it wasn’t much.

OK and so was this like a family trip, was it – ?

No, no it was with my school, we were going with a scientific organisation called Operation Wallacea actually, actually studying these animals with actual scientists it was great.

Wow

It was so cool.

Oh I’d really like to, South America I’d love to go to. Asia would be a priority I think just cos of course you can’t there. Australia is fine but -. So, we went to Thailand last year and part of the motivation for going to Thailand for our family was, you know at some point we’re not going to be able to go here so let’s do it now and let’s experience, experience it now. China would be fantastic. I’d love to go to Russia that’s not, that’s not a thing I don’t think transplant would limit that but I’d like to go to Russia you know.

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Paul and Christine talk about how they used the company Freedom to arrange dialysis abroad.

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And you mentioned the company, Freedom, was it?

Paul: Yeah.

And so they organise, or help organise –

Christine: They actually do trips for dialysis patients. They go to – I think they go to Greece, and Spain, and places like that, for groups of dialysis patients. It’s not really me, or us. But I can understand lots of people taking advantage of that. But then they also help you, I think it’s something like £60, or something like that, and they’ll sort out the dialysis for you, and book it for you, and all that side of it. So there’s

Christine: They do, yeah. We booked our own flights and hotel, and things, around where the dialysis unit was where we wanted to stay. But they would deal with all the liaising between the two dialysis centres, and get all the right paperwork in place, and make sure that – you know – Paul was fit and healthy, and had all the right

Paul: Was on the right dialyser, and the right amount of hours, and the right drugs.

Christine: So the right equipment is over there when you get there, etc.

Okay.

Christine: And it’s still a stressful thing, isn’t it, as you said – going into that first

Paul: And insurance costs a lot as well [laughing].

Christine: – into that first, yeah.

Paul: Well, that’s why I’ve always – that’s why we’ve always kind of gone for two weeks, knowing that I’ll get a one week holiday [laughing]. You go for two weeks, you know, fourteen days – two days travelling, six days on dialysis. You know, you’re only left with a week. Less than a week to actually have as a holiday as such.

Christine: Mmm. Yeah.

Paul: Because by the time you’ve finished dialysis, you know – okay, I could – I sleep on the, by the pool or whatever. But you still don’t feel great, and it’s still not enjoyable as such.

Christine: Yeah, so you have to sort of be careful what you plan. Well [dog barks in the background] you know your limitations, don’t you, and what you can and can’t do. Got to take into account the heat and everything, haven’t you.

Paul: Well that’s a benefit. Because it means you can drink a lot more [laughing].

Christine: Yeah [laugh]. Yeah, it has always been – yeah. Yeah. Forty degrees heat, and you can drink a lot more.

Paul: Yeah I was – yeah. I’m – I was restricted to 500ml a day, fluid, on dialysis. But when you’re on holiday, I was drinking whatever I want. Because I was just sweating it off during the day. So I was literally coming off the machine at a certain weight, and I was going back on it, less than that weight.

Christine: Yeah. Yeah.

Paul: Because I was sweating off fluid the whole time. If I didn’t drink, I wouldn’t keep up with that, so. It was good [laughing].

Christine: You’ve got to be able to manage that, haven’t you. That could be a bit tricky, that.

Paul: And we did feel with the Turkey ones, as well – we went to Turkey one year for two weeks, and then a couple of years later we wanted to go back, but we wanted to go for three weeks.

Christine: Mmm.

Paul: And I phoned them up and we had a discussion [dog barks in the background] and we got

Christine: Yeah, you can even haggle with dialysis, can’t you [laughing].

Paul: We got seven dialysis – we got nine dialysis sessions for the price of seven.

Really?

[All laughing]

Christine: So yeah, you can always haggle. In Turkey you can, yeah.

Paul: We got them down. Cheap as chips. They were going – cheap enough

[All talking at the same time & laughing]

Emma: But America, no. No. Flat rate.

Paul: Maybe it was just Turkey, I don’t know, but.

Christine: But, yeah.

Paul: They like to haggle.

Christine: Yeah. Got a free handbag thrown in at the end as well.

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