Episode #10 ADOA podcast: Noël (17) has ADOA-plus

Below you will find the transcript of this podcast.

00:00:03
Maud: Welcome to the ADOA Podcast. ADOA is a very rare hereditary eye condition. My name is Maud van Gerwen and I am here with…

00:00:11
Lion: Leon Augustijn. Together we will talk to professionals and experts about their view on ADOA. Welcome to this podcast. Welcome to this podcast again! I'm here with Maud and Noël. Great that you're joining this podcast! And who is Noël?

00:00:33
Christmas: My name is Noël, I am seventeen years old, I am in secondary school at MAVO level, I have ADOA-Plus, my vision is 30%, I get tired a bit quickly, and I would like to tell you about my experience with it.

00:00:50
Lion: Yes, because you get tired quickly from…

00:00:53
Christmas: Vision and daily exercise.

00:00:55
Lion: Yes, because you have to overcompensate a lot.

00:00:57
Christmas: Also, definitely.

00:00:59
Lion: Okay. You say you have ADOA-Plus, how do you notice that you have that 'Plus'?

00:01:09
Christmas: I certainly think that if I compare with others who only have eye problems, I will definitely notice more complaints.

00:01:16
Lion: Such as?

00:01:16
Christmas: As in maybe color blindness, muscle pain, fatigue, possibly hypermobility – I am a bit more flexible than others – and maybe migraines, which I could also suffer from, which are also included.

00:01:34
Lion: And what else do you do when you go to school? What does a day like that actually look like?

00:01:44
Christmas: Well, I always try to get a good rest before I start the day in the morning; everything calmly so that I save as much energy as possible. I take the bus, I don't cycle, I am on a physical list chronically ill limited school: VSO. I get normal material there. My school time - so mavo - normally takes me four years, I take five years. It has changed in the meantime, but for me it remains five years. In general I follow everything in a normal way, but I always indicate if something is difficult somewhere, and sometimes I also miss school days due to overtiredness. Then I can have some sick complaints, maybe fever or headache.

 

00:02:27
Maud: You say a school for the physically disabled, so I think there are children with all kinds of physical disabilities there, not specifically visual impairment.

00:02:41
Christmas: No, it's not for the visually impaired, no. That wasn't near me either. This was the only school near me that really suited me best. Regular might have worked, but then I would have had to really overcompensate, then I might have had more trouble with my eyes in daily life because I was just much more tired, that's not possible.

00:03:04
Lion: Yes, but I can also imagine that you might be treated a bit special, that people might be too cautious.

00:03:16
Christmas: Yes, people treat me anyway… I always don't tell them quickly that I go to such a school, because if people are VSO or special… then they immediately think that you are also mentally less good, but that doesn't have to be the case at all, that is a very big difference that people just don't understand.

00:03:35
Maud: Yes.

00:03:38
Lion: Yes, and what does that do to you?

00:03:42
Christmas: Yeah, not really that much, because I do understand those people. So if you don't have any experience yourself, and certainly younger people, their brains aren't fully developed yet, so I understand them completely. But I always try to explain it, and then I sometimes reach a point where I get annoyed because they just don't want to listen, or make jokes. And yes, that is sometimes annoying.

00:04:06
Maud: I understand.

00:04:07
Lion: And in the preliminary interview you also said that you have a dog.

00:04:11
Christmas: That's right, I have a buddy dog ​​from the KNGF, Kato.

00:04:15
Lion: His name was Kato, right?

00:04:17
Christmas: Yes, I have had that since grade seven or grade eight. I am now in my exam year – so actually the fifth grade. Yes, it has been a while. He helped me a lot when I was younger with my anxiety disorder that I had, or the fears that I also experience through my eyes by being able to interpret things differently in the dark and also in the light. Then I mainly think in the dark.

00:04:39
Lion: Yes, I don't have ADOA, and I can see just fine, how should I imagine something like that?

00:04:52
Christmas: I think that especially the first glance is the biggest problem. I think in the dark especially when you look at something, for example at a coat hanging on the coat rack, I think as an ADOA patient you make something completely different of that. Then you can perhaps imagine a head or something else, and that scares you, because you do not see reality.

00:05:12
Lion: Yes. And what does the dog do then?

00:05:14
Christmas: That brings peace, because you know when the dog is calm then there is nothing wrong, and that brings me peace. And the dog actually feels what I feel. So even if he knows that I am afraid, then for example he puts his head on my lap, or he stands close to me, against me, that just brings me a lot of peace, and that has helped me a lot. It is now also much less, but I still need it sometimes.

00:05:38
Lion: Yes, nice.

00:05:40
Maud: It's great that this is possible, isn't it?

00:05:45
Lion: Yes. But you are also a boy going through puberty, so how does that work with ADOA?

00:05:56
Christmas: Yeah, actually pretty much the same. I don’t think that during puberty it’s all that different. I don’t think that there’s all that much difference. I think in daily life that going out with friends or just going somewhere, that’s something you do more of course later, that’s a bit more difficult. Some things, for example, are impossible. For example, I have a lot of friends, almost everyone drinks then, I can do that because of ADOA – yes, I can do it – but that will make my eyesight worse, so I definitely don’t do that. So you sometimes run into that at parties.

00:06:29
Lion: And is it then, suppose you were to drink alcohol, that on that evening your vision would deteriorate more quickly. Or is that in the long term?

00:06:37
Christmas: Long term. It’s more like the more you drink, or anything really, smoking, vaping, drinking, all that bad stuff, it reduces the visibility of ADOA, and that’s not correctable so far. So I’m not going to do that at all, but that’s hard sometimes. When you see everyone else doing that, you don’t necessarily get jealous, but you kind of feel left out

 Yeah, yeah, I get that.

00:07:00
Maud: Yes, I understand. That's difficult. And indeed going out or doing fun things with friends, does that all go the way you would like?

00:07:09
Christmas: I have the advantage that I have friends, I have known them for so long and they have known me for so long, that I am not really bothered by it. But when I go with them to other people who have not known me for very long or have only just known me, then I notice that I have to adjust myself a lot on such a day, and I will feel that the rest of the week.

00:07:30
Maud: Okay, then you'll get tired faster.

00:07:32
Christmas: Yes, I will definitely adjust myself to their energy level. They just keep going and going, without actually taking a break. And the next day, I might have school, but I wouldn't be able to go there, because I would just be really tired, that I would just have a fever, then I would just have done too much.

00:07:52
Maud: Exactly. You just have to keep a close eye on yourself and think about where you spend your energy, I would say.

00:08:00
Christmas: Yes, I really shouldn't do too much. And sometimes, then you don't have much choice. Then I just really push through, because sometimes I also have to have a bit of peace that I just don't feel well the next day, because actually locking myself up every other day, I don't like that either. I also want a kind of normal life and as long as it is still possible, because I know myself that I will see less later. So I want to experience and do as much as possible as long as it is still as good as possible.

00:08:26
Maud: Yes, I understand that.

00:08:29
Lion: And if someone is listening right now, and they're in a similar situation to you, but they're a little more depressed, what would you say to them?

00:08:42
Christmas: Yes, I think you have to make some kind of peace with it, if there is no solution, or no solution yet. I am also suffering from that now, but you can't do anything with it. I would say: "Look at what you can do now, and do that as much as possible. And what you still want, try to achieve that".

00:09:05
Lion: And did you get it from your parents?

00:09:12
Christmas: I inherited it from my father. He has almost no symptoms, one of them, he just shakes a little. So I inherited it from him, that's a 50% chance, and he also has 'Plus' I think.

00:09:32
Maud: Okay, and you don't have any brothers or sisters?

00:09:34
Christmas: No, I am an only child.

00:09:39
Maud: And what about going on holiday, for example? Is that all possible? I don't know if you're already going on holiday with friends, or with your parents.

00:09:49
Christmas: Yes, I have been on holiday with friends, my parents were there, but they were friends I had known for a long time. That was just in the Netherlands, so that went well. I think, for example, I was at a swimming pool, and I have prescription swimming goggles – apart from my ADOA, my eyes are also not so good, I also wear contact lenses – but those prescription swimming goggles, the swimming pool sometimes has a hard time with me going down the slide, for example. So those kinds of things on holiday are difficult, and when it comes to abroad, I think the language is difficult, and those people are often not used to it, and that is also sometimes difficult. But generally speaking, if you explain it, it is not that difficult. You just have to be open and honest about it, and do what you can, because I can't do everything on holiday. I really don't do as much as other people, but I can still enjoy myself.

00:10:37
Maud: Yes, well that's important, nice.

00:10:39
Lion: Yes.

00:10:45
Christmas: For example, last summer vacation we went on a boat trip, and it was in Greece Rhodes, and there were Belgians and Dutch on that boat who did that. So that is very easy if you can find that kind of thing, that is much easier to explain. And you make it much easier for yourself than in English. And sometimes foreigners can't speak English well either.

00:11:09
Maud: Yes, I understand.

00:11:11
Lion: What has ADOA brought you?

00:11:15
Christmas: I think that contact with other people is much more important to you, and that you are happier with what you can do, rather than what you cannot do.

00:11:26
Lion: Yes, and can you give examples of that?

00:11:31
Christmas: That's difficult. I think if you look at... for example, I had remained stable recently. Many people are always just healthy, but I had remained stable recently for 1,5 years with my ADOA, and you are so grateful for that, and other people can hardly imagine that, that really does bring you a lot. If you notice that things are going really well for a while, and for example school is going really well while you know that you still have a kind of backlog, that does bring you a lot.

00:11:59
Maud: And do you also have a part-time job in addition to your studies?

00:12:02
Christmas: Yes, I am studying to be a shelf stacker at Hoogvliet. I do that for about ten hours a week. Yes, that is going well. But sometimes it is difficult for your fellow colleagues or your employer to take that into account. For example, I can fill less quickly than others. For example, if you are looking for a product, then you can sometimes have spots in your vision that I cannot see myself, but that are there, precisely on those products, then you really have to search for a long time, and then you do not get the work done, and they sometimes make a fuss about that and you still want to have the speed that they actually expect from everyone, but that is not possible. So they can sometimes be a bit more difficult about that.

00:12:45
Maud: Because they know that you have ADOA.

00:12:47
Christmas: Yes, that's right, they know, or at least all the managers know, and some regular colleagues are aware of it too.

00:12:54
Maud: Okay, yes.

00:12:56
Lion: But how does that work? I can also imagine if you apply for a job somewhere and you say that it is not that easy.

00:13:02
Christmas: I've had that too.

00:13:03
Lion: That people are prejudiced.

00:13:06
Christmas: Well, I did apply once, and they said I would be called back whether or not I was accepted. I was also completely honest about what I have, but I also simply stated that I can actually do everything, maybe it will just go a little slower, but otherwise everything is going well. But I was never called back, and I do suspect that it is going well because I was just too honest about what I have, and that makes you sad at that moment that you say: "That is not necessary".

00:13:38
Maud: No, I understand. That's very annoying. But with your current job, were you honest about that, that application?

00:13:50
Christmas: Yes, I was honest about that and I've been working there for almost 1,5 years now, and so far... I did change managers recently, or at least I got another one, who is very nice. But in general it's going very well. Only sometimes it's difficult when I don't finish my work, that they have trouble dealing with that, that they maybe give me a little less than others, for example one less trolley. Because for me it's sometimes just not possible when I have to search a lot on one trolley, then you really take longer. That is sometimes difficult for acceptance on the employer's side.

00:14:25
Maud: Yes.

00:14:27
Lion: Yes, and is it also the case that people then actually treat you differently consciously?

00:14:34
Christmas: Yes, yes, definitely. I have had people at work who had to give me direction, who then noticed that I had trouble with something. And then I explained it, who then also spoke to me differently, for example. So I am seventeen, but when they speak to me as if I have the mind of a twelve-year-old, for example, that I am really lower than I should be.

00:14:54
Lion: Yes, and what does that do to you?

00:14:58
Christmas: I myself do not pay much attention to it, because I also understand that it is really difficult for them to understand. But it is also sometimes a shame, you actually feel very low. You know of yourself that you are just healthy mentally and spiritually outside of your physical limitation, but you are treated differently in that, then you actually start to feel less. In fact, you then feel inferior.

00:15:26
Lion: Yes, and suppose someone is listening to this and they have the same feeling, what would you want to say to them?

00:15:35
Christmas: I would still report it to the person who talks to you that way, and if that person doesn't listen to it, I wouldn't pay much attention to it anymore, because there are enough people who don't do that. I myself have reported it to that person, he hasn't stopped himself, he still does exactly the same. It could also be in that person's character, but I would still make some kind of peace with it, because you can't just change people unfortunately.

00:16:03
Lion: Yes, but I can also imagine that you sometimes think: “Well, that would be fine for me to just go to the house, or to school, or whatever… to take advantage of it a little bit”.

00:16:17
Christmas: Sort of yes, I do – at least, I don’t do that very often, or almost never – but sometimes… for example, during my exams I have dictionary help and things like that, or reading aloud, and sometimes I know: “Yes, I can actually do that myself”, but then help is offered anyway. Like: “Well, then I’ll just make use of it, because I’m entitled to it”. So yes.

00:16:41
Maud: Or at home, if you have to help set the table.

00:16:45
Christmas: I don't really do that either, no. But I don't really like to abuse it myself, because I actually like to be very self-sufficient these days, I fit in a bit more with that, that I like to do things for me instead of doing it for myself.

00:17:01
Lion: Yes, but that's also part of puberty, that you choose more for yourself.

00:17:07
Christmas: I had tests, and the results were that I didn't really have anything special, or was actually just healthy, so no problems with my eyes. What happened then: everything was stopped, that was from my transfer from group five or group six at primary school, everything was stopped, I had big books, I had help, well, I had a lot, that was all stopped. Well, all my grades went down. Then we went to Bartiméus, did blood tests and other tests. We found out that I had ADOA after all, that was a year's time, that was difficult, because suddenly everything was stopped. I suddenly became much more tired, because I had to read everything in small letters. All help was stopped, so that was quite a difficult time.

00:17:56
Maud: Yeah I get that, so it went all the way back to…

00:18:00
Christmas: Really back to square one.

00:18:00
Maud: Yes / Yes.

00:18:02
Christmas: So then you finally get your help, then you have another examination, it turns out that you have nothing after all, and then everything is stopped while you clearly have problems with your eyes. And I think that I saw maybe 40 or 50% then, that is really too little when you compare it to 100%.

00:18:18
Maud: Yes, you would think that you would fail the eye test.

00:18:20
Christmas: No. I think it's special that they came up with it, still. And that was also recently in the hospital, where I was also tested two years ago. Then I got a prescription - that was during the corona period - and it was completely wrong. That was for new glasses, that had nothing to do with ADOA, but just for normal eye problems, but that is completely wrong. And that doesn't help you at all if you see less well.

00:18:45
Maud: Co-funding is not required.

00:18:46
Christmas: And the ophthalmologist I had in the hospital, he also said that I am now sixteen, or when I was sixteen or fifteen, that my ADOA will remain stable forever, that's what he said. That's also completely wrong. So that kind of thing, that actually makes you irritated, yes.

00:19:03
Maud: This shows how much is still unknown about the condition, and that not all doctors know enough about it, or are even aware of it at all.

00:19:16
Christmas: While it was a doctor who knew a lot about it, because he knew before I explained it… because I often have to explain it to doctors myself what it is, and what I have, but that doctor already knew it himself, and then I still find it special that I was told that I was not deteriorating, while I have clearly deteriorated somewhat since then, not very much, but every percent is something.

 

00:19:40
Maud: Yes, yes, definitely.

00:19:43
Lion: Yes, great. Thank you.

00:19:45
Maud: Thank you.

00:19:46
Christmas: Yes.

00:19;48
Lion: Thanks for listening to this podcast.

00:19:51
Maud: Should you have any further questions or wish to discuss this further? Please contact us via our website adoa.eu.