The people we spoke to had different ideas and approaches to getting information about Alport Syndrome. Because Alport Syndrome affects different parts of the body, often people wanted information about what was affecting them at that time. People made choices about getting information based on what was available when they wanted it, and what felt right for them (see also: People’s attitude to Alport Syndrome and their outlook for the future). Whether they used the internet and social media, talked to family members or their hospital consultant, or whether they preferred finding out how others with the condition had coped, what mattered was that the information provided was reliable, up to date and right for them. In this way, many people used a ‘mix and match’ approach to getting information from a number of different sources.
Angela says that how much knowledge you want probably depends on what kind of person you are.
Angela says that how much knowledge you want probably depends on what kind of person you are.
Age at interview: 40
Sex: Female
Age at diagnosis: 10
SHOW TEXT VERSION
PRINT TRANSCRIPT
It's that whole debate of how much knowledge is helpful, and how much isn't. And I think it probably largely depends on what kind of person you are, and how you feel about things.
It's a very individual thing, isn't it.
Yeah. As in like I know that I remember when my sister wanted to kind of drill down more into what's going to happen and why, and like basically know. And I'm probably slightly more on the side of just get on with it and see what happens, because - you know - I've always thought lots of awful things could happen to you anyway, and there's no point thinking about that all the time, otherwise it's a bit depressing [laughing].
So you have to kind of like deal with… point where I probably have - I generally think you have to deal with what comes up. I suppose the only thing - again, it's like that thing isn't it, there's things you can prevent. Which is why I think the new studies are interesting, because if it is true that ACE inhibitors protect your kidneys, and so that sort of preventative measure should then - actually, that made me - when I heard that - which was actually at Alports UK conference, not this year, the year before.
Lucy was nervous about going to an Alport information day, but feels it was one of the best things she did.
Lucy was nervous about going to an Alport information day, but feels it was one of the best things she did.
Age at interview: 38
Sex: Female
Age at diagnosis: 8
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well we go a lot of information from the Alports, the Alport UK charity information day; we went to that last, this last winter, last January. My husband and I went with [my son]. We hadn’t told the children anything at that stage; we hadn’t actually told anybody anything apart from my parents I think and my sister who babysat for us that day. Nobody else knew about [my son’s] diagnosis at that stage, so we went along to that and I was really worried about it, you know I was really nervous about what we were going to learn and how distressing it was going to be and, you know was it, you know it's just hearing about what my, my boy was going to have to go through. But it was, it was fantastic, it was the best thing we did because we got lots and lots of updated information; we made some contacts; we talked to some people who were incredibly reassuring and, you know we talked to people who'd been through it. And actually it's the first time that I'd introduced [my son] as somebody with Alports who, it's was the first time I was actually able to say it and it was really useful to also to meet some families who had made the same decision that we'd made and to feel that, you know we could discuss that and nobody was going to judge.
Robin mainly relies on his medical team at the hospital but sometimes goes online to read up on what he has been told.
Robin mainly relies on his medical team at the hospital but sometimes goes online to read up on what he has been told.
Age at interview: 62
Sex: Male
Age at diagnosis: 26
HIDE TEXT
PRINT TRANSCRIPT
Well I think I know as much as I’m ever going to need to know. Let’s just put it that way. I probably don’t do as much active research than I do now. I kind of reaffirm, reconfirm what my type of Alport Syndrome is, what you know what the outcome would be. What the percentual mitigants are to that. What can and can’t be done. And so it, it’s helpful to reaffirm some of the things that you’ve been told directly by your own physicians. I suppose. You know it’s. I think I will still rely on my physician to be the primary source of information and then really if I just wanted to read around or understand a bit more about what I’ve been told in a consultation that’s when I would use the web rather than as the primary source. A) Sometimes it’s out of date, sometimes it inaccurate but more. You know certainly the physicians and the surgeons and so forth I work with up in [the hospital] I absolutely believe that, you know we’re in the best with, in the best places in the world to do with some of these things. And that’s where I’m going to learn exactly what the issues are and what’s happening and what, what needs to be done. If I want to read a bit more so I don’t take up all [the hospital] time then I can do that but that’s where I would ask my primary questions.
As Alport Syndrome is rare in the general population, some people had found information was limited, particularly if they had a rarer form such as autosomal recessive (see Alport Syndrome - messages to others). Many people chose to look for specific information at different stages of their condition and used a combination of the internet and talking to their doctors. Certain events often prompted people to search for more information for example, after diagnosis or before starting dialysis. Some liked to check out their medication on the internet and find out about possible side effects. If people had a new or unexpected symptom, or when they wanted reassurance about an aspect of Alport Syndrome, they sometimes turned to their doctors or went online. Some people had used information from the Alport UK and US Alport Syndrome Foundation websites to help prepare them for what was to come, or to help them make a list of questions for their doctors. People also spoke about being the person in their family who sought out such information.
Michael Y wanted more information after diagnosis and now looks up internet information to find out about other people’s experiences of Alport Syndrome.
Michael Y wanted more information after diagnosis and now looks up internet information to find out about other people’s experiences of Alport Syndrome.
Age at interview: 25
Sex: Male
Age at diagnosis: 24
SHOW TEXT VERSION
PRINT TRANSCRIPT
As soon as I got diagnosed, that's when I started diving right into all the research and stuff. And because it's kind of on a case by case basis for each family, it was kind of like - you know - one thing was like you'll be dead by 40, sort of thing [laugh]. Which was like, looking at my family, no one really dies at 40 in my family especially. Because if you get diagnosed, there's at least some form of treatment, and things like that. Also the progression of gene therapy as well, that's something that's interesting, and is coming up time and time again on the news and stuff, where mainstream bodies are getting funding and permission to carry it out. Lots of gene therapy, so. I don't think the future's bleak or anything like that, it's always gonna progress scientifically.
If there's something - or just, you know, if I forget anything to do with Alport syndrome, or just want to try and find other people's experiences of it, then yeah. I still google at least sort of a couple of times a month. I saw in the United States there was two twin boys maybe, who were both diagnosed with Alport syndrome, but had been misdiagnosed with whatever illness the doctors believed they had, for a number of years. And it wasn't until they were I think in their late teens when they started going through kidney disease. So I still Google, just to make sure like, to look at the differences between my family, how it affects us and how it affects other people's family. Because as I said, I think we're quite lucky that it's quite late in our - well not late in our lives, but later than some other people, when it starts affecting us. Because I think my - I think it was my Mum's grandad who was a medic in World War II, and he died when he was 30 from it. So I think that's sort of our benchmark of treatment. Like in you have to get treatment before you're 30, or else - that's when it might kick in. But I think my cousin's been on the same - I think the same sort of ACE inhibitors as me, for a long time. And I think [doctor] has used my cousin's sort of data in his research. And it looks as if the medication is sort of prolonging the time between well, the initial diagnosis and when your kidney functions start to fail further.
Amanda says she is the ‘information person’ in her family looking into things further.
Amanda says she is the ‘information person’ in her family looking into things further.
Age at interview: 39
Sex: Female
Age at diagnosis: 33
SHOW TEXT VERSION
PRINT TRANSCRIPT
I think I do get stressed about things. I can't say I don't. I do get stressed. But [sigh] I don't know. I don't know how I deal with things, to be quite honest [laughing]. I think I just take note, and I maybe - I need to look into things further, and find out a lot more information. And it's there, it's always there. And I tend to be the information person. Because like if any of - I'll get a member of the family saying "So, what is this? And how does this work? And what does it?" You know, they don't really - and maybe they don't want to look into it. Or, or kind of like 'no, this isn't happening'. You know? This - that kind of way. Where I'm like "No, this is happening. And this is what's gonna be, down the line. You know, this is the way it's gonna be." Maybe that's my way of dealing with it. And maybe when it actually happens I'll fall apart. Who knows? Who knows? It's, it's - we'll not know 'til it actually - I don't think I will. I think I probably will crumble to bits. But I think I'll probably be the strong one that'll be like "Right, come on, this is happening. This is what needs to be done, and."
Many talked about the pros and cons of looking up ‘Alport Syndrome’ online. Some people found that some websites contained information which seemed very negative and worrying. Alison felt that information was sometimes conflicting. Michael Y said that the information online could be “very binary”. Alan worried that online information could be damaging.
Jayne said the general information she found online frightened her but that the consultant provided her with advice specifically about her son’s condition which was more reassuring.
Jayne said the general information she found online frightened her but that the consultant provided her with advice specifically about her son’s condition which was more reassuring.
Age at interview: 40
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Yes, I did. Yeah. I went to look it up, yeah. And I don't think that was a good thing to do, really [laughing]. Not on the - you know - the places where I looked. It was a bit, I don't know. It wasn't very positive. And it, I should have just listened to the consultant, and he said, "Look, just take it a day at a time and, you know, see what they find out." He says, "There's no point worrying 'til we get a diagnosis." And he says, "And when we get that, then I'll talk you through it." But when you read things on like Google and things, it's not always positive, is it. And then I have found that the experience with it, and what they said - although they did, they have said what could happen, living with it, it's not as bad as you think. You know? Because he hasn't, they haven't got kidney failure yet, and they're bouncing about. And people that see them think 'oh, there's nothing wrong with them'. Because as it stands, they're absolutely fine. And, you know, playing football, riding their bikes, you know? They're perfectly okay, yeah.
So the information on the internet was quite negative, then?
Yes. Because it, it told you - it told you everything that could happen, but it didn't say all the good. That it, you know, chances are it may not. And look positively. And things like that. It, you know, [laugh] it didn't come across like that. And you're in like a bad frame of mind when you're looking at it. And I think your mind tells you, 'oh, it's gonna be all bad', you know? Yeah, so.
What sort of things did it say then, on the internet?
Well, it said things like that they know males get the worst symptoms. And that they get hearing loss in early teens. Well because mine had got the hearing loss at infant school, I was thinking 'oh, mine have got a worse strain than everybody else's, because it said early teens and mine have got it really early, the hearing loss'. And then it said by the age of 25 they'd have kidney failure. So I were thinking 'oh, well because mine got the hearing loss early then they're bound to get the kidney failure earlier'. And it was just things like that that frightened me, because it could have said, "Sometimes you get it early." Because when I did say that to my consultant, he says, "Oh, it doesn't necessarily mean that the kidneys are going to get worse, just because the ears have got worse." So it was things like that. Yeah.
Patrick found that when he looked up Alport Syndrome three years ago, some unofficial forums dramatised the condition.
Patrick found that when he looked up Alport Syndrome three years ago, some unofficial forums dramatised the condition.
Age at interview: 17
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I'm hoping it's changed. So, in about three years ago I Googled Alports – just interested in the same way you Google your name or whatever. And the sites there it was a lot of like unofficial forums that were just spouting rubbish about it, just, just, just stupid stuff. Like painting Alport, it was something like, 'Alport – a life changing condition.' Like it's not, it's really not; it's something that you can deal with and it's something which doesn’t, in the grand scheme of things, it's not limiting; it's not, I don’t think there's any reason to be scared of the condition and I think a lot of online pages dramatise it and they make it something that you're fighting day after day and ah isn't it impressive that this guy, you know, he's got through it and he's got like – no. You know it's, it's not a big deal, at least in my opinion.
Many people weighed up the positive and negative information they saw on the internet and took a very balanced and realistic approach. Generally people said that if you were careful about which websites you used, there was usually a lot of useful and helpful information available. Donna felt having access to other people online to compare notes with, was very helpful for her. Paul said that information on the internet could “send your mind flying” but at the same time he enjoyed helping others on social media sites and forums. A few people said that they checked the validity of a website and weighed up how trustworthy it was. Many people spoke about information on Alport Syndrome changing: Angela said that when she was originally diagnosed, the internet “was not as big as it is now”.
Michelle says that it’s a balance between a fear of the unknown and having too much knowledge.
Michelle says that it’s a balance between a fear of the unknown and having too much knowledge.
Age at interview: 47
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
Oh, that was [the doctor]. Yeah, the nephrologist. She said, "You know, there's not a lot of information out there, what's out there isn't, isn't pleasant. And there are various different strains of Alport's. There's not enough information out there about each different strain. It's not tailored individually enough so, you know, it's not worth."
So when you said you had a quick look, what did you sort of find? What sort of stuff?
Kidney failure. You know, children or adults experiencing kidney failure. Not getting transplants quickly enough, and - you know - horrible. Horrible.
Yeah, kind of. It's a bit of a balance, isn't it, this fear of the unknown, but then once you know sometimes too much knowledge - if you've got too much knowledge about something, sometimes it can be a bad, bad thing. It's trying to put it into perspective and think well they're both really fit and healthy, they're both enjoying life, living life to the full - you know, within their age group, sort of thing. Long may that continue, sort of thing.
Richard Y is careful about which websites he uses, and has found it useful to also attend Alport UK information days.
Richard Y is careful about which websites he uses, and has found it useful to also attend Alport UK information days.
Age at interview: 37
Sex: Male
Age at diagnosis: 23
SHOW TEXT VERSION
PRINT TRANSCRIPT
And you're quite an advocate of looking on the internet for -
Yeah, try and search out, but look - the NHS website is, for any sort of renal problem, is quite good. Anything dot gov. Be careful of being lured into anybody trying to sell you a cure, or a save, or eat some turmeric and you'll be okay. Yeah. I looked at them to start with, and then realised that if something - if that's, if that was true, then the NHS wouldn't be spending millions and millions on renal medicine each year. So, go to places like Alport UK, find out when the next meeting is. Go along. I went along, not really knowing what to expect, and there's such a good mix of people. People who've been transplanted, people who are - kids have Alports. People who are, who certain stages of renal issues, or kidney disease with Alports. So you're gonna meet somebody who's in a similar situation to you, possibly locally to you as well. I went to one about two years ago, we got information on - for my daughter, or who was on the way. But in a year or so's time as she's a little bit older, we could probably go along. Been told there should be no concern in these early four or five years. And about five - four or five - they might start taking blood. But in the meantime if they notice anything, to do that. So for me, it's that. And then there's a few people who've had transplants as well. And looking to try and see people who've had transplants for twenty years and thirty years, and forty years. But it's so uncommon that it's difficult. Or people have had transplants maybe because of Alport, I don't know, they've just had shrivelled kidneys, or it's been diagnosed as something else, so. I'd just say to do that. Get as much information as you can.
People had very different views about how much information they wanted to know about Alport Syndrome because the information could be difficult to live with, and most people wanted to enjoy the here and now and get on with life. People who hadn’t had a diagnosis until later in their life sometimes said they were pleased they hadn’t been told all the facts in advance. Donna said that sometimes “ignorance is bliss”. Some people wanted to seek out as much information as possible whilst others were more cautious and satisfied with smaller amounts of information. Most people said this was to do with their character and attitude and outlook. Amanda felt she was the sort of person that liked to know everything and have more knowledge. Michelle said she was very careful about seeking out further information about Alport Syndrome as she feared “bleak” and “horrible” stories, particularly on the internet.
Dee researched everything she could online and as a result felt much better able to cope with dialysis.
Dee researched everything she could online and as a result felt much better able to cope with dialysis.
Age at interview: 51
Sex: Female
Age at diagnosis: 48
SHOW TEXT VERSION
PRINT TRANSCRIPT
You do get things from the hospital, but it's your basic information. I think you're supposed to use that to go and ask questions when you go and see the doctor again. But of course I just got online and researched everything I could. So a few questions - I had pages of questions when I went back in. But it's great, because the more you can find out, I think the easier it is to cope with, when you know the ins and outs and everything. Worst case scenarios, I researched that as soon as I found out about it. And I knew exactly what was gonna happen, when it happened. So when they said to me "You know, in the next few months you'll have to go on dialysis." It was like "Oh, gosh." Bit of a shock. But I researched it. And then when I went in on the day, he said "Right, now's the time you need to go on dialysis." I was fine. You know, I was like "Right, okay." Well, I knew that was coming. And it just - you know. And everybody says that's quite surprising because - even my doctor was surprised how well I took it. But I said "Well, I knew it was coming. It was inevitable, sort of thing, so."
Alan says that although he is analytical and wants to know information, at the same time he doesn’t want to have too much knowledge.
Alan says that although he is analytical and wants to know information, at the same time he doesn’t want to have too much knowledge.
Age at interview: 49
Sex: Male
Age at diagnosis: 19
SHOW TEXT VERSION
PRINT TRANSCRIPT
I've always said that they do keep you in the dark, sometimes. You know, renal consultants and things. But I think - I don't know, as a youngster I used to think maybe because they just want you to get on with your life and they don't want you to look. I was always, as a youngster and now even, very analytical and want to know. So I read things. But contradictory to what I said to you before, I don't wanna know too much information, no. Because, you know, the impacts of having too much knowledge in that respect can be, you know, a bit depressing, so.
Many people got information from hospital doctors and renal units about Alport Syndrome (see also Alport Syndrome - messages to others). Some said they felt their hospital doctor provided them with enough information so that they didn’t have to become, as Kevin put it, “an amateur sleuth”. Other people said that they were disappointed that GPs and other healthcare professionals didn’t know what Alport Syndrome was. People said they were impressed when a health care professional had taken the time to research it. A few people talked about their doctor not providing enough information at critical times. People also mentioned not being given the full picture about their condition. This often prompted them to find out more information online. Patient View was mentioned by some people as a good source of information because it helped people feel more in control of their condition (see Resources)
There had been a mistake with Donna’s previous test results and later on she was not told about her kidney function decline as it was happening.
There had been a mistake with Donna’s previous test results and later on she was not told about her kidney function decline as it was happening.
Age at interview: 47
Sex: Female
Age at diagnosis: 3
HIDE TEXT
PRINT TRANSCRIPT
Yeah. I still didn't feel - at one time, again, like I - when I was 30, and I'd just had the doctor tell me that I was going to be on dialysis by the time I was 40 they then did me another blood test probably the year later. And obviously I was anxious to get my blood test results. So I was phoning up [hospital], "Are they there yet? Are they there yet?" There was a doctor there who funnily enough I have conversed about, through Facebook, with other sufferers, not known for his sympathy or empathy. He just "Oh yeah, you're alright, don't worry. Your kidneys are normal." That was his answer. So I, I wrote quite a stroppy letter saying 'if my kidneys are normal, why have I been coming here for the last thirty years?' You know, that is just so disrespectful, how could you tell somebody your kidneys are normal? And at that time, my kidneys were at about seventy five percent, I believe. And which they class as normal. But it's - how can you say that to somebody? You know, "Your kidneys are normal." I just found that so disrespectful. And he was just so flippant about it. And he's still there today. I just make sure I don't see him whenever I go [laughing].
My kidney function was okay. Like I say, it's sort of between seventy five and fifty percent, until this last sort of seven years. And I had - really didn't, didn't think about it. You know? Once I finally realised that they had made a mistake, I didn't let it upset me or anything. But I wasn't, I was doing a lot of exercise. I was, a gym fanatic at the time. My ex-husband was - he was sports centre manager, and then went on to go onto the college to teach students what he learned at college, if you like. So sports was his life. So I used to do a lot of 5k runs, we did 10k runs. We used to go up to the lakes every year. I've climbed Ben Nevis. And he, so him being a health and fitness fanatic, I was at my best ever, ever. Sorry, excuse me. For, you know, I was at my healthiest ever. Just enjoying life really, you know. We just, we did loads, always doing something - walking, running, in the gym, swimming. And I was just - once I knew they'd made a mistake, you see - but then again, having said that, once I knew they'd made a mistake, I'm back into the notion of 'I'm just a carrier, I'm gonna be fine' [laughing]. So it just, it was furthest from my mind, you know. We went every year to [hospital], "Yeah, you're okay, you're okay, you're okay." But not realising that the numbers were just slowly decreasing from seventy five. Was then finally I think in 2012 they actually give me a report. And it shows the figures since about 2002. And it shows how, the slow decline. Which again, angers me because they never told me that they were declining. So again, the health profession don't arm you with enough information. I know on one of the Facebook posts, a lady - a doctor had known about her kidneys deteriorating slowly, but only told her when she'd already reached stage three. And I think that's just disgusting. I think if there's any alteration, surely you should be armed with that knowledge, to deal with it how you want to deal with it. You know, that poor lady, she could have stopped herself from ever getting to stage three, had she have known. You know, just by making small changes in her diet and lifestyle.
Steve’s GP didn’t notify him about his blood test results which showed his kidneys were failing.
Steve’s GP didn’t notify him about his blood test results which showed his kidneys were failing.
Age at interview: 37
Sex: Male
Age at diagnosis: 3
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well to be honest with, with the nephrologist, I'm indifferent because they didn’t know any better. When it came to finding out that my GP had failed to notify me of changes in my blood that showed that I was critically ill, I was very angry.
For quite some time.
But I managed to kind of channel that into something else cos I also had to be well – be a father - and you know actually get through the whole process of dialysis and transplantation which really were more of a problem than the anger I felt towards my doctor.
So yeah but nothing came of that. I made complaints to the correct authorities and, yeah nothing came of that in the end, so that is quite rage inspiring but not much can be done about that really.
Michael Y feels his nephrologist is very knowledgeable and really likes him.
Michael Y feels his nephrologist is very knowledgeable and really likes him.
Age at interview: 25
Sex: Male
Age at diagnosis: 24
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well he knows my cousin, because he's who he sees at the renal unit, I think. So he also knows my Mum, I think, just because our family's so well connected within the Alports world [laugh]. But he's very lovely, he's very knowledgeable about it all. He seems quite excited by the new drugs and everything. It was his sort of typing up of Alport syndrome on the hospital website that I read. And then I saw him, so I was like 'oh, I can put a face to like the research that I've read, and things like that'. And I think he does do a lot of the Alports days things around the UK, so. It's quite nice, because Alports was discovered by an Edinburgh uni graduate, I can't remember when, in -
Cecil Alport.
Mmm, yeah. In 1927 or something like that. So, coming from Edinburgh and being diagnosed with Alport syndrome, it's kind of like you know, a little bit of history [laugh] in itself. But [my doctor’s] really nice, I really like him.
Many people sought to connect with others in a similar situation and went to charity information days as well as speaking to other family members. As Alport Syndrome is often hereditary people said they spoke to parents or other family members to get more information. People spoke about asking questions on forums or finding out information from others in a similar situation particularly if their doctor had dismissed something such as a side effect. Sometimes people went online when they didn’t want to talk to family members or friends. A few people said that they wanted to help others and were actively involved in raising awareness and taking part in online forums.
Alison contributes her experiences of Alport Syndrome to a special online forum for support and information and finds it incredibly helpful.
Alison contributes her experiences of Alport Syndrome to a special online forum for support and information and finds it incredibly helpful.
Age at interview: 33
Sex: Female
Age at diagnosis: 20
SHOW TEXT VERSION
PRINT TRANSCRIPT
And you mentioned about your support, having a really good network of family, and sort of friends, and you think that's the main - do you feel like you can sort of talk - do you talk with them about your sort of emotions, and?
To a certain extent. But there was a lot of things that they just wouldn't understand. So what I tend to do is I've joined a forum. Which I log onto, and it's for people worldwide, and go in, and you can search for a topic and see what other people have said about it. I've also met - or not met in person, but there was somebody who added me on Facebook who had read about me on the forum, and she also has Alports. So she got in touch with me to see how I managed, just to find out when I was diagnosed, and - so, she's not started dialysis yet, but they have said to her that it's on the cards, so. So yeah, it would be - it's, so yeah, there are certain things that you can't really discuss with friends and family. Or you could, but you want to know how other people's - other people are coping with it, but. You know, so I tend to go onto the forum for that.
And how do you feel? Do you feel like you're helping other people then, by doing that? And because you'd been supported, and?
Yeah. I was able to write a huge paragraph on everything about it all, you know, and how - how, how old I was when I was diagnosed, and whatnot. And she was concerned about going on holiday, because her husband I think was from [place], and would she still be able to go and visit his family? So I was able to, you know, reassure her. And she did say, you know, "Thanks, it's been really good, and helped a lot." So yeah. It's good to be able to help other people. I've also given talks over at the hospital on pre, pre-dialysis talks to - you know - patients who are coming up to the stage where they're gonna be put on dialysis. And I've done an actual exchange in front of them, so they can see what, what happens when they do that.
Yeah, do you feel that - is that something quite important for you to connect with other people who -
Definitely, yeah. Because you, you might know that you're going to see your GP, your renal consultant next week, but there might be something playing on your mind and you think well, I just want some reassurance that other people have gone through that as well, or had these symptoms, and that it's nothing to be worried about.
Yeah, do you sort of ask questions about symptoms? What sort of things have you talked with other people about on social media?
When my hair started falling out, that was the one that I went straight onto social media about. And it was quite a relief to find out that I wasn't the only person that had happened to, and there were others out there that had gone through the same thing. And they hadn't had it explained to them that this medication, you know, this is a side effect. Because I remember telling, speaking to my GP about it, "My hair's falling out all of a sudden." And him saying "Oh yeah, that is a side effect." Well, it would have been nice to have been made aware of that, so it wasn't such a shock when it happened. It was just one day in the shower, just chunks of it all coming out. This isn't normal [laugh].
Amanda feels that the best advice comes from others who have Alport Syndrome too.
Amanda feels that the best advice comes from others who have Alport Syndrome too.
Age at interview: 39
Sex: Female
Age at diagnosis: 33
SHOW TEXT VERSION
PRINT TRANSCRIPT
It's the people that's, it's the people that are going through it. You can read every book under the sun that advises you of something. The best people to speak to about Alports is the people that are living with it. Because then they can see well yeah, this does happen. Or, well it doesn't necessarily happen to me, but yeah maybe I know somebody that's got it that it has happened to, and things. People kind of advise you of things, but you're - the best advice that you can receive is someone that's actually going through it. Who knows what you're going through yourself, you know?
So have you found that more useful than GPs and?
Yes. To be quite honest, yes. Well, it's a difficult one, because the GPs have got the medical side. Where we have the symptom side [laugh]. Or dealing with it side.
They, they - they're the ones that can advise you on, you know, what's the best meds and things like that. Or if they've came across things that, you know, other people maybe not know about, the kind of scientific medical kind of side. But the, the personalisation and the kind of symptoms of certain things that comes along with Alports, it's individuals that are dealing with it that you're best speaking to regarding that. Definitely.
Patrick says that Alport Warriors on Facebook is very useful for getting information.
Patrick says that Alport Warriors on Facebook is very useful for getting information.
Age at interview: 17
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
In terms of transplants and information about Alports I've had it a lot from my mum. As I said the Units have been very helpful as well. Something I've found very interesting has been our support page for our Alport network. Something I found really interesting has been our support page for Alport which is, I think, called Alport Warriors on Facebook. It's a bit of a twee name but the people there you know, you have, not only do you have researchers; you have doctors etc. and people that are all different stages of Alports. So, they have, you have people that have had transplants, that are on dialysis, they are just about to have it, that haven’t even really been affected yet because, or someone that, and mums of kids that have Alports for example. All, the whole range there and that’s super useful for information about the condition.
Copyright © 2024 University of Oxford. All rights reserved.
