Well I think that they should arm the patients with more details.

I’ve never – you know – it’s only recently that we’ve had joys of the internet. You know? If I’d have known more, I – I probably would have had a healthier lifestyle. I’d, you know, have weighed my enjoyment of night clubbing with healthy lifestyle. You know, you can do both. Yeah. I think they really should be arming patients with all the information that they’ve got, that they possibly can give them, for patients to decide where they want to take it, what they want to do with it. It just seems that they’re reluctant. You know, and they do sit – like they still say ‘oh, you’re a carrier, you’ll be okay. That’s not the case. We now know through social media – I’ve found more out through social media than I’ve found out from health professionals. You know? And that’s wrong.

If the doctor – all I’d have ever probably found out from [hospital] is my numbers, my GFR. You know? This is where you’re at with your kidneys. That’s, that’s all the information they’ve ever given me, to be quite honest. And then they’ve told me “Oh, you need blood pressure tablets, you need this, you need that, you need the other.” But with social media and web searches, you can find out how the blood pressure is linked to the kidneys. And how, you know – they have said to me “Oh, take – you know – reduce your salt intake.” But it’s from I think a site like Alport UK, where they’ve actually got – and I’ve got it on the back of my larder door – a thing that shows you what’s high in phosphate, what’s low in salt. You know, so you can make your own food choices. But I’ve never been given any of that information from any professional. I’ve got that off the web, you know, off various websites, to help me with my eating. And so helping with blood pressure, helping my cholesterol, I’ve had no information.

And what message would you give to sort of healthcare professionals, if you wanted to give them a bit of advice or anything, or?

[Laugh] stop sending information about X chromosome [laughing] to everybody. I know it’s the – almost like the default, because it’s the most common version. But, unless everybody has the DNA test, I suppose they’ll just automatically assume it is the X chromosome. And I realise that it’s expensive to do DNA tests, but maybe like, yeah. Maybe a few more people need to have them, and then they can distinguish who has what type.

I’ve never read anything about someone with the autosomal recessive Alports. So I kind of think well you don’t really know what’s gonna happen until I get to that point in my life. I remember at one point being told that people with – I think when I was younger and they presumed it was the X chromosome, is that – you know – boys would have needed a transplant by the age of 30, but whether since then they’ve found out more research that that’s not necessarily trued. Yeah. But, been and gone 30 myself and I know I’m not a boy, but [laughing]. But I’ve not had any, any – yeah – any like symptoms since. I still feel exactly the same as I was probably when I was younger and they stumbled across it, so.

So it’d be interesting to see other people who have autosomal recessive, and see what’s happening with them.

Yeah. As soon as they know, and you know, that there’s something – there’s a condition of some sort, they should really, really tell you everything that they can possibly tell you. Probably not then and there, because you’d probably be a bit shell-shocked. But, you know, they should have more pamphlets, and more counselling. So that you can absorb yourself with all the knowledge that you need. You know, I grew up and there was nowhere to go, to ask about anything. I grew up believing I was just gonna be a carrier. I didn’t have children, because of that. Still only fifty percent. Probably if I hadn’t have spent ten years running, and having a really good healthy lifestyle, I could be further down the line, you know, than fifty percent. So, definitely, had I had more knowledge when there wasn’t a website out there to search.

And you mentioned counselling just there. Do you think that’s important for people with Alports?

I do. Yeah. Again, the only type of counselling I had – they call it counselling, but since I’ve had mental counselling – it’s not counselling, it’s just like an information thing, about the genetics. You know? They inform you of the fact that it’s fifty percent chance of passing it on, and then it’s worse in boys than it is girls. I wouldn’t call that counselling, even though they say “Oh we’ll put you into some genetic counselling.” I do think people need proper counselling, and so that you can actually deal with everything one on one, you know? Have a few sessions so you’ve got all the information that you need. To , to use it at your will.

So, not like necessarily genetic –

No. No.

– factual –

I think like a kidney nurse or somebody. Like I say, the lady that I met at Christmas, who did a dissertation on kidney disease. She would be, you know, fantastic. [Tape 3, 41:54] You could have an hour session with her, you know, once a week, once a month, whatever. You know? Because each time you’re gonna want to know more, understand more, you know? From one answer comes another question. So I do think kidney patients should have a bit more medical awareness, from professionals.

And support then, for dealing with those questions.

Yeah. Yeah. That’s it. And once you’ve got all of the questions answered, again, we know that there’s no prognosis. You just need to know all the facts, so that you can deal with it in a better way. You know, my Dad died at 28, his mum died at 28. I thought I was gonna die at 28, because I had nobody to tell me any different. Do you know what I mean?

So you needed someone to go through that with you.

Yeah. Yeah. I needed somebody to help me, to guide me It’s just a coincidence that they were both 28. And my Dad was 4 when his mum died, and I was 4 when my Dad died. So, you know? [Laughing]. With everything I’d been through in life, everything that life had thrown at me, you know, you’d think – gonna die at 28. I think that’s probably why I partied hard No health professionals to give me any guidance. I had no understanding, no concept of anything whatsoever, so.

And – oh, yeah. So if you wanted to see like a sort of better service for people who’ve got Alports, from the NHS, what would you want to see?

Obviously the patient confidentiality thing, they can’t really disclose other people’s details, but I think there should be some way that people can know who’s in the area who has – you know – obviously there’s all the social media sites that do these things, but not everybody’s on social media. Not everybody’s aware of these things. I don’t do social media. I think I’m probably the only person in my age, you know – especially all my circle of friends, and I’m like “I don’t do all these fancy sites.” No, I don’t bother. I don’t like them. It’s not really my cup of tea. I’m quite happy – if you want me, phone me, text me. That’s it. You know, come to my house. And I think that’s the thing, you know, you’re kind of missing out on that loop because you don’t do this. I’m still on the internet, I still do sites, I still do things, but I don’t do social networking. And I think that that should definitely be more proactive, like a, an actual online board for people who are suffering from the same condition. You know, forums to chat, meet up and whatever. Just for that extra support. Whereas a lot of that stuff I got from like the private organisation, from the charity there. More like that there, the ones that sort you out and get in contact with other people who’ve got similar, and – you know – they do that. Whereas they shouldn’t really have to do that. I think like, you know, especially like the Alports and stuff, especially when it’s a really rare condition, they should try and let other people know, you know, that you’re not alone, and there is somebody else with the same kind of things as you.

So sort of –

Like a forum or something.