Patrick

Age at interview: 17

Brief Outline:

Patrick was diagnosed with X-linked Alport Syndrome at a very young age due to a family history of Alport Syndrome. Alport Syndrome has primarily affected his hearing so far, but Patrick expects to have a kidney transplantation as soon as his kidneys start declining. In general, Patrick feels that with social support Alport Syndrome doesn’t have to be a life changing condition.

Background:

Patrick is in his last year of college. His family are part of a national charity and support group for people with Alport Syndrome, and Patrick is active in awareness-raising and peer support. Ethnicity: White British.

More about me...

Patrick was diagnosed with X-linked Alport Syndrome at a very young age. Alport Syndrome runs in his mother’s side of his family and one of his younger brothers has it as well. As Alport Syndrome has always been part of Patrick’s life, routines such as taking medication or doctor visits feel totally normal for him.
So far, Alport Syndrome has mainly affected Patrick’s hearing. He started wearing a hearing aid at age 8. Patrick recalls how the hearing aid felt ‘incredibly liberating’ once he got used to them. He has recently switched from an NHS hearing aid to a private one, which is much smaller and less intrusive. Patrick doesn’t think that his hearing condition has much impact on his social life, and it has never stopped him from going out or playing sports. Generally, he finds that people are very helpful and supportive if they know he has a hearing aid.

Patrick hopes to have a kidney transplant before he has to go on dialysis. He used to sink into periods of depression from the prospect of such a major operation, but since the process and the prognosis of transplantation were explained to him, he feels less worried. He plans to travel for a year after he finishes his studies and visit all the countries he potentially will not be able to after transplantation.

Patrick and his family are active in a national charity and support group, Alport UK. He is also part of a youth network for people with kidney conditions. He finds it essential for newly diagnosed people to talk to others with Alport Syndrome because he feels that much of the available information is overwhelmingly negative. Patrick received most of his Alport-related knowledge from his mother, but he also found hospital units and some online forums very helpful.

Patrick’s message to people living with Alport Syndrome is that “it doesn’t have to be anything else other than an inconvenience”. He would advise them to try and develop a routine around their medication and hearing aids because that helps normalise the condition.

Patrick says that if he had children with Alport Syndrome he would give them support and normalise the condition.

Yes, I'm very, very conscious though that the way you essentially eliminate, you ensure that your kids don’t have it is likely I think and that’s not, I don’t think, my decision. If, if theoretically speaking if my kids had Alports I don’t think I would feel a sense of guilt. What I would try to do is give them all the support. What I would try to do is give them all the support and all of the help and understanding and normalisation that I have had because what I've ended up as is a guy that is completely happy with what I have, with my condition.

Patrick says his ‘carefree’ attitude to Alport Syndrome is the result of all the support he’s had.

You know I think my positive attitude and my carefree, I guess, attitude to my condition has come from not only having it become very, very routine; so I've had this for as long as I can remember. I've had a massive amount of support from my mum, from my family cos of course it's a genetic condition so everyone's in it together. From the Alport UK support network, and a lot of, the last of couple of years it's been sort of helping people that have just realised they had the condition and you know, talking, talking to people and sharing our experiences.

In summary I just think my approach my Alports is that it doesn’t have to be this thing which you're battling and you're trying to understand. With the right support network and the right information and the right outlook it's very easy to deal with. Teachers and colleagues and everything, they are really understanding if you give them the opportunity. Yeah it doesn’t have, Alports doesn’t have to ever be anything else other than an inconvenience I think.

Patrick’s education was suffering but once he got used to having hearing aids he found them ‘liberating’.

It was honestly, initially it was very, very difficult. Just before I had the hearing aids I found. I was very disruptive in class I think for the two/three/four year lead up. I think this is a, a general pattern with deaf kids where they, they're not engaged with the class cos they can't really hear to the level they should be. They're disruptive. You know I wasn’t a poor student but I think I was definitely compromised. When I found out I had hearing aids it was, it was I think a seamless a transition as it could be. So, we had someone come in and explain them to my eight year old self, you know to have a talk to them, me about how they would impact my lessons, how to use them. It was hard initially but it slowly became apparent that these were just amazing things like that I was suddenly you know my education took on a new light; it was incredibly liberating for me.

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

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.

Patrick’s friends were fantastic about it when he started wearing hearing aids.

Oh it was, it was fantastic, and my friends were fantastic about it as well. They were all really excited that Paddy had found, you know, this new gadget. And honestly I remember my eight year old self being really excited about it cos they're sort of a novelty. You don’t see many kids wearing hearing aids these days and my eight year old self, I think really enjoyed it. He was, he was quite proud of the fact that he was unique in this way.

So, your friends reacted very positively?

My friends were really great actually, they were helpful and stuff like when you're in a group right, it's very, very hard as a person with hearing aids because you can't really focus on multiple people, you have to, you know be very aware of who's speaking; you have to look at them and you have to read their lips. My friends were absolutely ready to help me with that – you know stand in a circle so I could see everyone – that sort of thing, it was great.

Patrick found that when he looked up Alport Syndrome three years ago, some unofficial forums dramatised the condition.

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.

Patrick says that Alport Warriors on Facebook is very useful for getting information.

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.