Alport Syndrome

Frances: It's a strange one because people say like - especially if I'm at my work or something, and somebody says something to me oh “blah blah”, and they go "What is it you've got again?" And they look at you as if you're a weirdo. And you're like "It's Alport syndrome." And they go "Never heard of that." And I'm like "Nobody's ever heard of it. It's fine." You know, you get that used to explaining it. And when I was wee, the only way that my Mum ever explained it to me was "Your kidneys are like sponges." Because when you've been to the doctors, they're like a hundred words and you're just sitting there thinking 'no idea'.

Christine: So, we both met at work. So we worked at the same place. And as I say, Paul was on CAPD when we met. You used to use that system, didn't you, for dialysis. So, yes and you - the funny thing is, Paul said  if ever you got the transplant [laughing], you would ask me to marry you. And then a little while later -

Paul: Thinking I'd have a few years. Six months later -

Christine: [laughing] A little while later.

Paul: [laughing] Or it wasn't even that.

Christine: [laughing] No. Along came the second transplant. So yeah, we got married in '91. In '91. So I've always known Paul with, you know, all the problems that Alports brings. And dialysis, etc. But then you had your transplant. And we had quite a number of years. So, how many years?

Paul: Fourteen.

Christine: Fourteen years. And that's when we had our family then. So, Emma and [our Son] came along in those years, didn't - didn't they, so. But we've always had to deal with the Alports, haven't we? And it just becomes - in your family, it just becomes the norm, sort of thing. You know, it's there, and you just - just deal with it, really. It's hard to explain, you know. So many people will - if they say "What is Alports?" And you explain, and dialysis, and things. And they're sort of a bit blown away with all what goes on around it. But when you actually live with it, you just - just get on with it, really. Yeah.

Karen: Yeah it's a serious disease but I think there's, there's ways 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.