We asked people what advice they would give to others who are living with Alport Syndrome. Everyone is different and what works for one person may not work for someone else. Here are some of their suggestions.
Many people wanted to get across that a having a full life is very possible with the right support. Maintaining a positive attitude, despite the challenges, was often seen as important as well as not giving up or letting Alport Syndrome “rule” their life. Kevin, who had been on dialysis and had a transplant, felt that Alport Syndrome is “not as bad as you think” and “life goes on”. Robin said it was important not to be ‘personified’ or defined by Alport Syndrome and to have other things to focus on such as work, hobbies/interests and family. Deborah’s advice was to “get out there and enjoy it whilst you can”.
Frances feels the outlook for people with Alport Syndrome is good.
Frances feels the outlook for people with Alport Syndrome is good.
Age at interview: 35
Sex: Female
Age at diagnosis: 16
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Just think it's not the end of the world. I think that is the big thing. When the diagnosis first obviously my Dad, then me, then my wee boy. You just think that your life's over, and - you know - this is the worst thing. "Why me?" And it's life. You know, we get dealt what we get dealt, and you just need to deal with it. But things have changed dramatically. And the outlook is not bleak, it's looking good. Things are changing, and they're discovering new medications, and growing kidneys in labs and doing all sorts of fancy things now, so. Just stay positive, and keep going.
Paul says not to give up and to keep fighting.
Paul says not to give up and to keep fighting.
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Paul: Oh. Don't give up. Three things. This is, this is gonna sound really, really corny, I know. But [laughing] three things I've been told. One was by my consultant when I first went onto dialysis, and he said "Don't dialyse to live" - ah, say it the other way around. "Don't live to dialyse, dialyse to live." That was what he always said to me.
Christine: Mmm.
Paul: And, you know, I think a lot of people have taken that on, on that BKPA site. I said it a long time ago, and I hadn't - I hadn't seen it before then, and I see it a lot now. Another one was my Mum, who said, "You know, you've got to work harder than the next person, just to keep up with them." And my Dad said, "Don't let the bastards grind you down" [laughing]. That's my Dad, being blunt as usual.
Christine: [laughing]
Paul: I kind of live by those. You know, it's all about attitude, I think. Yeah, you can - sometimes you can't control your attitude and you can be depressed, and. Through the bad times on dialysis I was really depressed, in bad places, but. Don't know, it's about fight.
Christine: Mmm.
Paul: You know? It's about digging in and getting on with it. You've got to have something to fight for, though. There's no point, you know - you've got to have something. And I totally understand there's people out there that haven't got any they haven't got a family, or friends, or - like I've got. So I totally feel for them, and I know it's hard to do it on your own.
Karen says that, although it is a serious condition, there are ways of dealing with it and getting treatment.
Karen says that, although it is a serious condition, there are ways of dealing with it and getting treatment.
Age at interview: 42
Sex: Female
Age at diagnosis: 33
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Or if you want to summarise anything or say what would be the message that you'd give people?
I think, yeah it's a serious disease but I think there's, there's way of dealing with it you know. Even when you get to kidney failure stage you know, there's always dialysis and transplant as treatments and I think, you know, it's important to know what your kidney disease is caused by but it shouldn’t rule your life until you actually get that failure. I think, for the young people that are being diagnosed, maybe they should just try and forget about it. I know that’s hard - , harder you know done and said, but to put it to the back of their mind and just try and live as much as they can while they're, you know they're still healthy and try and keep themselves healthy.
You know I mean I managed after my kidneys failing for eighteen years at the same level so, it's not, it doesn’t mean once you’ve failed that’s it, you know you're on dialysis – you can live in failure for years and years and years you know. So yeah I think that’s it really.
Dee’s message is to keep active and continue working if you are able to do so.
Dee’s message is to keep active and continue working if you are able to do so.
Age at interview: 51
Sex: Female
Age at diagnosis: 48
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Just carry on living as normally, until it takes that toll on you, where you have to change lifestyles around. If you can carry on working, do so. You know, if I had an office job or something like that, I'd have probably been alright and kept on with it. But you've got to be careful. If you're a machine operator of any sort, you need to be careful, got to think about the safety, and think about other people really, you've got to take that into consideration. But if you can carry on working for as long as you can, do so. Keep active. And I do keep active now, because I've got my dogs and my grandchildren and family. And sometimes I think to myself 'how did I fit work in?' But then again, I'm up in the morning. But I'm in bed for eight o'clock at night time. You know, that's guaranteed, because I'm falling asleep anyway, so.
But, yeah. Just try and carry on, and be happy.
People often advised others to keep going to doctors’ appointments, take medication, and look after themselves by having a healthy diet and lifestyle.
Jago and Wilf feel that a healthy diet and exercise is important and can delay the need for a transplant.
Jago and Wilf feel that a healthy diet and exercise is important and can delay the need for a transplant.
Age at interview: 17
Sex: Male
Age at diagnosis: 11
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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.
Donna advises others to get healthy and fit and enjoy life.
Donna advises others to get healthy and fit and enjoy life.
Age at interview: 47
Sex: Female
Age at diagnosis: 3
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Again, from what the renal nurse said, all I can say - the only thing you could do for yourself is fitness. Look after yourself, and eat well. You know? I've seen a difference in my, in myself, when I've been healthy, healthy and fit. How sort of slowly the numbers went down, with the Alports. And how quickly they can rapidly change when I've been on a poor diet, and - you know - not exercising. More so that you do have less energy, as well. You know? I wish - probably if we was having this conversation in a year's time, after I've had a year of being healthy and fit, fit again. You know, and I go and have some more blood tests. I wish I could say "Yeah, I'm fantastic - you know - everything's great." So you've have to chase me in a year's time and see how I'm doing, because as I say, I've only just literally - haven't gotten over all of last year's issues. I've literally just got the dust off my walking boots, and - and got the veggies, and the salads out again, and the fruit. So, I think that's - that is it, basically. Enjoy your life. You've got to enjoy it. But do, you know, do some exercise and eat healthily.
Getting good information was critical because it helped people deal with their condition (see also Alport Syndrome - getting information). Some, like Sarah and Katie, advised others to get as much information as possible and said “don’t be in the dark”, and Steve advised “be your own expert”. People like Kevin suggested being selective with gathering information from the internet and trusting the doctor.
Having information and hearing other people’s positive experiences have helped Lucy and her family most.
Having information and hearing other people’s positive experiences have helped Lucy and her family most.
Age at interview: 38
Sex: Female
Age at diagnosis: 8
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I think the thing that’s helped us most is information and that’s probably a personal thing but I think it's really helped us to arm ourselves with as much knowledge as possible to be able to then go to appointments and ask the right questions and to get straight answers, and to not sort of feel that we're perhaps being protected from the truth or, you know being given information that with hindsight it's slightly disconcerting when, you know when you get home and you kind of think, 'Oh my god what did that actually mean?' You go in armed and then when you are given that kind of answer you can say, "Well what do you mean by that?" you know, "Does, but surely we were told at this stage that such and such is actually happening instead," and you can just question things a little bit more. So, I think for us that’s what's, that is what's helped the most. And meeting other people who are in the same situation because the, you know the-. Obviously the emotional side of it is very tricky and there are lots of people in our situation; lots of people who have children who have a condition, and lots of people who are a lot worse off than us and you know I hold that thought all the time. And a lot of people don’t, you know are just living with stuff and dealing with stuff every day and don’t share it so, you know I think it's, I think as an experience it's made me much more kind of considerate and tolerant of what other people might be going through.
But I think that, yeah having information is absolutely key for us and, you know hearing about other people's positive experiences is very, very helpful.
Some people had specific advice for young people, mainly about not worrying too much and enjoying life as much as they could while they were healthy. Mary and Philip thought it was important for young people to get a good education, which would help them get a good job, and that any barriers to this (such as hearing loss) should be tackled. Robin felt it was essential to get decent hearing aids. Some people also thought that it was important to fight for support to be provided in schools and at work.
Mary, Phillip and Karen feel it was difficult for Anthony to go back to college, and so advise others to get a good education.
Mary, Phillip and Karen feel it was difficult for Anthony to go back to college, and so advise others to get a good education.
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Karen: Yeah. Think it is, yeah. Because like I say, had he had his time again, he said he would have done things differently.
Mary: Mmm.
Karen: And like I say, he didn't have the choice –
Mary: Well I think we could have –
Karen: - he had to stick with joinery.
Mary: Yeah.
Karen: Because he couldn't really go into any - well, I mean, we did say to him, "You know, go back to college or whatever." But then there's the cost of it, if you've got kids, you've got a family. It's more difficult, isn't it, when you're middle-aged than when you're younger.
It's not easy.
Mary: Yeah.
Karen: So if you can get a good education –
Mary: I think when we - we should have helped him more –
Phillip: I told him not to go back. But he, he - like it wasn't just as easy, to go back to school, is it, but. But I think they do need encouragement when they're younger.
Mary: Yeah.
Phillip: You know, because obviously they are gonna get a bit behind.
Mary: I wish we'd have encouraged him more.
Phillip: Yeah, but you couldn't have done anything different, really.
Mary: No, I don't say more with it - no. To do more things with him, to help, to get him more help.
Phillip: But I think the help's got to be in the classroom, hasn't it.
Mary: Yeah, I know. But I think if somebody had - we could have helped him more, rather than done - so I'd tell somebody that.
Phillip: Well I don't know how you, I don't know how you could have done that.
Mary: No. Just having extra lessons somewhere.
Karen: You're just giving advice to somebody else now, aren't you. Yeah.
Mary: No, if you were giving advice.
Phillip: Yeah.
Mary: If you could afford to give him extra lessons with somebody, to help him.
Jayne says there is support out there for hearing loss but that sometimes you have to fight for it.
Jayne says there is support out there for hearing loss but that sometimes you have to fight for it.
Age at interview: 40
Sex: Female
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Well, in my experience, it hasn't been all doom and gloom. And there is a support out there. You know? And just keep fighting for everything, and make sure that you - you know, especially with the hearing side, it is a battle but you will get there eventually. You've just got to make a nuisance of yourself and fight for it [laugh]. Yeah.
Michael X says that it’s a balance between living life to the full and taking care.
Michael X says that it’s a balance between living life to the full and taking care.
Age at interview: 82
Sex: Male
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Yes. Well, you've got - you must live life to the full. And you must do the things that make your life worth living. But balance it against some care. There has to be some care, there has to be. And the medics and scientists will give you advice about that, as to what you can and can't do. Can't eat, for example, what drugs you can and can't take, for example. So it's important to be - to get advice, and to get management advice to young people with this awful threat of renal failure.
Alison and Debra said that many treatments were available and advances were happening in research which gave hope for the future. Robin and Alan said you could have a normal life after a transplant.
Richard X believes that transplant surgery is now quite routine.
Richard X believes that transplant surgery is now quite routine.
Age at interview: 39
Sex: Male
Age at diagnosis: 9
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Yeah it’s I mean it’s one of those, it’s a condition which isn’t it’s not life threatening, I wouldn’t call it life threatening, it’s something which once you know about it and you get your head around the fact that eventually you will have to have a transplant, actually transplants are very common the only reason they’re not as common as perhaps they should be is, there’s not enough people on the waiting list sorry there’s too many people on the waiting list, not enough organs but actually it’s quite a routine operation now and most surgeons I think that do transplant surgery treat it as quite a routine they do it every single day sometimes twice a day so it is a routine operation. so really I wouldn’t say it’s major Alports isn’t, it hasn’t really, it hasn’t ruined my life by any means it’s there are worst things you can have and it’s just making sure that you know, I think know the right, that you get the right amount of information from people from the right people and that you stay positive and do whatever you can to help yourself, yeah.
Having a support network was seen as vital. People spoke about seeking support and information from others in a similar situation. Jago and Wilf said that people with Alport Syndrome are not alone and that there are others to talk to with the condition who would understand what they are going through.
Steve feels finding others in the same situation can be very helpful.
Steve feels finding others in the same situation can be very helpful.
Age at interview: 37
Sex: Male
Age at diagnosis: 3
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Well I'd, I suggest they look to find other people in the same situation. Alport UK, the charity, have brought so many people together, you know there's even a page on Facebook where people can go and ask questions but I mean they can match people in similar areas if they want to talk or meet. I've spoken to a few people on the phone that have had their children recently diagnosed, or they’ve been recently diagnosed themselves, or they're about to have transplants and, you know want to speak to somebody that’s had that experience. It's, yeah finding people with, with common ground is a really good way of, of getting information, realistic information, not just statistical information from doctors, and also some understanding.
Amanda advises not being afraid to ask questions and to connect with people in a similar situation.
Amanda advises not being afraid to ask questions and to connect with people in a similar situation.
Age at interview: 39
Sex: Female
Age at diagnosis: 33
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Don't be afraid to ask a question. Doesn't matter how silly it sounds. If you want a question answered, ask it. Or go onto the local sites that's been created to help people out there. Speak to somebody that's going through the situation. You can ask your medical doctors the questions. And yeah, they'll tell you what they know medically. But ask someone that's going through it. And you're not alone. Because you do feel - you first of all get diagnosed and you've never heard of this condition before, if you don't know anything about anybody that's - because there is folk that for some reason haven't got it. They've never heard of anybody in the family getting it. So this is a big scary thing. They're like, "What? Alports? What's, that's that?" I had it in the family, didn't know that much about it. Because it wasn't affecting my immediate family, it was affecting relatives that obviously I know of, and I knew what they had been through. But I suppose as well you don't want to ask them questions about their condition, because you think it's rude, it's rude to ask somebody a question about it. "So, what - what is this? How did you get this?" You know, "What is it? What did the dialysis mean to you?" I remember going into my, my Mum's uncle's house. And I remember the machines being there. And I was obviously younger. Maybe about 12 or something like that, 10. But I remember not asking questions. Nobody talked about it, you know, and it was just - he was on this machine, didn't know what the machine was, you know? And it's not 'til you're older that you realise what that machine was for. But nobody talked about it. So I think nowadays people are more open about things, to talk about things. And don't be, don't be frightened to ask a question and think to yourself 'mmm, don't really know if I should ask this, because I don't want to put - you know'. You can ask questions on Facebook nowadays and you get all these negative opinions for certain sites and things like that. But that's not what Alports - the Alports UK one is about. It's never a silly question. We just go on and express how you're feeling. If you're having a bad day, go onto that site and just - the Facebook account, and just say to them, you know, "Just needing a wee bit of help here, guys - can you answer this for me?"
Angela and Amanda said that they thought it was important to “press” their doctors for more information when necessary. Several people suggested writing questions down and taking these to their doctor, and advised others not to be afraid of asking the doctor questions (see Alport Syndrome - messages to healthcare professionals).
If something is worrying you, Angela says it’s important to persist and speak out.
If something is worrying you, Angela says it’s important to persist and speak out.
Age at interview: 40
Sex: Female
Age at diagnosis: 10
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Well I think probably for patients, I think probably that you have to deal with things in a way that works for you. You know, for me it was getting on with things, and trying to be as normal as possible. But I know that other people feel reassured by information, so. And also listening to your instincts a bit. Because there has been the odd occasion where I knew something wasn't quite right. So for example when I had the colitis. I knew when I was pregnant that there was something that wasn't just being - I'd been pregnant before, there was something that wasn't - and it was only because I sort of persisted, saying to the midwife "Actually like this isn't right."
They did something, and they kept trying - before that, they were giving me - and so I suppose both those things that enable you to - for the same thing, which is for the patient to know when to kind of press things. And don't feel bad about pressing them. Because if they're worrying you, they need pressing.
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