Perhaps he was too busy gaming to look after his own health?

hotblack:
I don’t think Alex should be receiving a hard time about this

What gets me is that the first loser “optometrist” sat on it for months. The second loser “optometrist” sat on it for 6 months. In a young man with worsening eyesight problems that’s negligence. He should have seen an opthamologist anyway, unless the terms were mixed up.

You’d be surprised – I’ve had one opthamologist turn me away because he said I was too young for Glaucoma, meanwhile, my eye pressures and other symptoms say otherwise. am now going to another specialist 6 times a year for checkups.

edit – 6 times a year? wtf.. every 6 months, is what i meant. bah.

What gets me is that the first loser “optometrist” sat on it for months. The second loser “optometrist” sat on it for 6 months. In a young man with worsening eyesight problems that’s negligence. He should have seen an opthamologist anyway, unless the terms were mixed up.

Secondly, surely the wonderful Dr McAlister can see it in his kind heart to assist this gentleman. I think that’s what gets me the most. And if this procedure is in “trial stages” then how can you charge money for it? If it’s a “trial” then there should be no charge, it’s a trial and therefore a study, with ethics and all. No-one pays to be in a trial, you GET paid to participate. How much is this procedure anyway?

Thanks for your level-headed and precise explanation. The internet, and the world at large, would be a far better place if it was filled with more people such as yourself.

I’ve removed the quote you referenced, and my sincerest apologies to any sufferers who were offended.

The first human eyes were treated in 1998.

I am around Nick’s age, a gamer and I also suffer from Keratoconus – my eye was so far progressed that Corneal Cross Linking would not work for me – so I had a graft last year, amongst my university studies.

I can therefore sympathise with Nick and the difficulties he must be facing at the moment. The reason, I believe, other Keratoconus sufferers are getting so passionate about your article has nothing to do with Nick’s situation, but entirely down to how Keratoconus is misrepresented.

Before I go further, I must say how much I laughed at your statement that “your eye squeezes itself out of your skull” when you suffer from the disease, it really made my week. But on a serious note, its statements like this that cause all sorts of speculations and assumptions to be made about our disease, subsequently misinforming more people who then may misinform others and .. well you get the idea.

I do not blame you at all for being misinformed about the disease, most of the nurses I come into contact with at my local hospital have never heard of it, so why should we expect an editor of a games community to know?

The only problem is that, with articles on issues as sensitive as this, if there are glaring inaccuracies – it can be offensive (as you can see from other comments) and as I have said multiple times, can misinform other readers who have no knowledge of the condition.

Whilst you are right in defending Nick and his family’s decisions – of course we cannot, and should not speculate (for the record, what I think they are doing is incredible and I will show my support), I think its bad that you are trying to defend your inaccuracies. If you were to write an article on people with autism, referring to it as a ‘behavioural difficulty’ or something along those lines, I’m sure you would be faced with just as much criticism.

If you can edit the article, then I’m sure much of the Keratoconus community would be grateful – I think most of the commenters have already pointed out the major flaws.

I do thank you for attempting to raise awareness for the condition, however, it is very encouraging to see support from all areas of society – I only ask that you review some of the inaccuracies highlighted by other Keratoconus suffers.

Thanks!

Either way, I want to thank everyone for their criticism and support. You don’t get better in a vacuum, and if we can all walk away knowing a little more and having a little more empathy at the same time: it’s been a good Sunday.

“Re. the medical treatment: medicine doesn’t move at the rapid pace of gaming, so any treatment that was still in clinical trials a few years ago, I think, can quite easily qualify as “new”.”

It really depends on the surgery but yea I pretty much agree with this statement in this context

unwright: I’ll be legally blind at 40, and the operation (penetrating keratoplasty) 100% cures the disease. Until then, the treatment is collagen cross-linking, a cheap and quick surgery that halts all progression of the disease and does almost nothing to reverse it. The recovery in all cases is somewhat quick (as in, back and working within a week) and the aforementioned “pain” doesn’t exist. Literally no research was done in the writing of this article, and it blows my mind. Do it a little legwork next time and maybe you won’t come across like a sensationalist tool.

I mentioned that Nick may require a corneal transplant or graft later on in life, so I’m not sure why you’re complaining that I ignored or glossed over it like it wasn’t a possibility. (In case people are wondering if the two are different, read more here: http://en.wikipedia.org/wiki/Corneal_transplantation#Penetrating_keratoplasty)

But Nick can’t have a graft or a transplant now … he needs cross-linking. The surgery’s been scheduled in; it was recommended that they not delay. Why should they ignore that advice?

Secondly, information supplied by Dr McAlister suggests that patients take at a fortnight off work; if you were able to return within a week, then that’s fantastic. Some require less recovery, some require more.

You also ignored the part where there was a possibility of the cross-linking treatment failing to take. This isn’t a 100% done deal. According to Dr McAlister:

“My own experience is that the risk of continued progression after corneal cross linking is 20% for juveniles rather than 5% for adults with moderate progressive keratoconus.”

You even mentioned that you will be legally blind by the time you turn 40. That sounds fairly serious, to me, but then again I’m not living in your body.

And you’re not living in Nick’s either.

Re. the medical treatment: medicine doesn’t move at the rapid pace of gaming, so any treatment that was still in clinical trials a few years ago, I think, can quite easily qualify as “new”.

Alex Walker: Your criticism has been wonderful and I’m glad you came forward and pointed out everything you did.

Open and intelligent discussion was why the internet was developed … well mostly

Alex Walker: The only charitable perception gamers carry in the wider media in recent times has been a loose and willing quiver of racist, sexist and bigoted insults. Dead Island sums it up the best; there’s an equally distasteful example in the Sunday eSports column I wrote last week.

I actually know nothing of this dead island drama you’re talking about mostly because i see “dead island” and immediately go into “avoid it like the plague mode”

Einstein was once asked what it would take for the world to accept special relativity to which he replied “for the old people to die” which is pretty much spot on and applies here aswell.
The people in-charge of the media don’t understand gaming and the internet and are terrified at the vast changes they are making so rather than try to understand it’s easier to be little them, it’s sad but I really wouldn’t expect “the media” to change untill most of the people running it die

unwright: Cross-linking isn’t “new”.

Cross-linking the procedure dates back to 2002, it’s use in Australia 2008
It depends how you define new.

Alex Walker:
spooler,

I should have specifically said that the cross-linking treatment is new; my apologies.

Also, just over 10,000 people would be statistically affected by keratoconus in Australia (given that the accepted rate is 1 in every 2000, not 1/1000 as an earlier commenter claimed). And given that there are few specialists for the disease, do you not think that qualifies as “rare” ?

Secondly, I don’t understand your complaint about how a gaming community banding together to help out someone in need isn’t “newsworthy”. That seems an astonishingly cold view to take, especially given the last fortnight of controversies about misogyny and the Dead Island nonsense.

Cross-linking isn’t “new”.

spooler:
I do wonder why this is news worthy, when no one goes out of there way on GoN to advertise things like desert bus for hope (to my knowledge I could be wrong).

Having only just had the time to read this article at length, it seems rife with inaccuracies the worst of which in my mind is the following

A new disease ? it’s been around possibly as early as the 1700′s and was named in 1869.

I’m not exactly sure how you claim it to be “such a new disease”

Which leads me to the question how much time did you spend looking into the condition before writing this incredibly long incredibly inaccurate article ?

Literally no research was done on this article. The writer has no idea what he or she is talking about. I have keratoconus and all these “facts” are a bunch of shit.

mcgwiggy:
This makes me sick! There is so many inaccuracies with this article. I have had Keratoconus for 7 years and had my crosslinking with Jim McAlister and recently a graft. Crosslinking is uncomfortable for 2-3 days and is most certainly NOT excruciating pain! (I have been in labour twice). Suck it up buddy, it is nothing compared to that! a 9 year old boy went through it for heavens sake!! You get drops to take home, it completely takes away the pain as well as a shield over the eye. Your eye does not squeeze itself out of your skull! WTF?? There is 1 in 1000 people that have this condition and is defiantly not rare. I was a young mother with two kids when I had my crosslinking done and paid for it OURSELVES, with only my husband working! And also recently paid for the $8000 graft that I had with Jim. Keratoconus is not nice but there are defiantlyfar more people who are suffering with more serious conditions and you should be ashamed of yourselves for having this pity party. Here’s an idea sell the computer and games?? You also do NOT go BLIND from this condition. Pathetic!!!

Exactly this. I’m in the same boat. Have had it for 6 years. It’s NOTHING as bad as this article makes it out to be. It’s 100% curable, and the treatment stops progression entirely. Besides, the crosslinking only stops progression. It doesn’t treat anything like the keratoplasty would. This article fills me with rage from how utterly fully of shit it is.

I have keratoconus. It’s not frightening. It’s 100% curable, and treatable until necessary. He’s never going to lose his sight under any circumstance. This disease isn’t a tenth as serious as this bullshit article makes it out to be. :/

Like, seriously? This disease is LITERALLY NEVER as serious as the article makes it seem. It literally doesn’t affect the eye to such a degree until you’re decades older. I spend 90% of my time in front of a screen, and I never have to squint or experience the issues he does. I realize that people are affected in different ways, but never to this degree. No study ever has ever shown progression of this degree. What a bunch of shit.

best of luck with it dude, no doubt you are reading this article and left thinking “wtf community is this?” – ignore the haters.

I’m not upset or offended; one of the advantages of playing Counter-Strike, one of the most abhorrent and pig-like communities ever to infest the internet, I suppose.

But this isn’t about me. It’s about a family whose hit hard times, a kid facing a frightening disease (his specialist told him he’d go blind, which after not knowing why your eyesight isn’t getting better would certainly scare the hell out of him) and a group of strangers who are trying to help any way they can.

I may have come across as exceedingly defensive earlier, and I apologise for that. Your criticism has been wonderful and I’m glad you came forward and pointed out everything you did. I just got a little touchy when the particulars of Nick’s family came into the equation, since his family isn’t here to defend themselves and yet people are seeking to pick apart their lifestyle and income.

I’ve never been a fan of telling someone I’ve never met what their situation is really like. It’s arrogant and a trait I’ve been battling as a child; it’s unbecoming. So again, if I went a little hard, I really shouldn’t have.

But I’m not going to apologise for shining a spotlight on something that deserves it. And at the end of the day, if everyone walks away a little more aware about keratoconus and a little happier knowing that a community did what it could – it’s worth it.

Alex Walker:
mcgwiggy,

Surely that should be something to be welcomed, not reviled?

Unless he did it out of greed not need, I’m not claiming he did but we should always be vigilant for people trying to pray on our sympathies, I don’t really think that’s the case here but it is still something we should be vigilant of in all cases.

Alex Walker:
spooler,

I should have specifically said that the cross-linking treatment is new; my apologies.

Also, just over 10,000 people would be statistically affected by keratoconus in Australia (given that the accepted rate is 1 in every 2000, not 1/1000 as an earlier commenter claimed). And given that there are few specialists for the disease, do you not think that qualifies as “rare” ?

Secondly, I don’t understand your complaint about how a gaming community banding together to help out someone in need isn’t “newsworthy”. That seems an astonishingly cold view to take, especially given the last fortnight of controversies about misogyny and the Dead Island nonsense.

You should have said this specific treatment is new to *insert person treating him* as the treatment has been around for more than a few years now, when talking about things like this there are people who have to go outside the country for new treatments, again my issue is it seems like the article is being made to sound worse than it really is

.I’m not qualified to make a statement on what is rare my opinion however is that 1 in 2000 is not rare
by definition 1 in 2000 I believe is borderline having said that I have no particularly strong feelings with it being classified “rare”

You’re correct it is a cold view to take, however it is realistic 1 person who likely could thru their own means get treatment is not all that newsworthy sure make an article I don’t really have an issue with it it’s just wierd to me that this gets attention when, Child’s Play Raised a record amount last year, and there’s no news article for it.
My point was more in a statement on gamers do lots of good things all the time, that just go un-noticed and I wonder why this particular good deed is all of a sudden “news worthy” I don’t have an issue with things like this being news articles, it was just a bit of social commentary really I do apologise if I offended/upset you Alex.

rapid101: I’m also surprised he said centrelink wouldn’t support him as his parents joint income was above $40,000 but I thought you had to reapply at the beginning of every year?

It won’t arrive in time. The specialist told Nick that the procedure can’t be delayed any longer; the surgery is booked in for February 1.

There’s also the problem of Nick’s mum currently being on income protection until her specialists – she had a knee replacement last year – can determine if she’s a) capable of returning to work and b) finding a suitable position within the QLD Department of Education – a state which hasn’t exactly rolled out the red carpet for new public servants over the last 12 months.

rapid101: What does this have to do with anything in the article?

You complained that it wasn’t newsworthy, that the donation drive wasn’t worth writing about. This is a regular column about what happens in the local competitive gaming community; do you think this sort of thing is so frequent in Australia/New Zealand that it should be ignored?

Nick has also been looking for work; it’s not like he’s trying to earn money from eSports. He’s a member of the community but he hasn’t thrown away his studies and employment to become a full-time professional.

Unfortunately, Nick’s been recovering from a broken wrist and a torn ligament which has kept him out of his regular seasonal job, and any employment. Things are tough.

Keratoconus Australia puts it at 1/2000, so that’s what I went with. And I don’t disagree about the value of saving: but I really don’t think you, or anyone else, is in any place to be making what would be deeply personal and highly offensive remarks about a family’s situation. Do you know these people? Do you know their situation? Are you in any way qualified to be telling them that they have more money than they actually know about?

One of the factors at play here is that Nick began the donation drive by himself – it didn’t start with this article, in case you’re wondering – and he didn’t tell his family until after the first donations were made. So you shouldn’t be ringing them out to dry for this. An 18-year-old kid didn’t know what to do and he reached out for lack of a better idea, and people responded in kind.

Surely that should be something to be welcomed, not reviled?

Alex Walker:
mcgwiggy,

I appreciate that you might have been able to cover the costs of your operation yourself, although surely you would understand that sometimes not everyone is able to cope when faced with hard times. Please don’t denigrate a family’s suffering just because you were able to come through the other side.

Also the procedure is designed to halt the progress; the 5% chance refers to the possibility of eyesight being improved as a result.

Furthermore, keratoconus can cause legal blindness if left unchecked; while I’m sure you might not value the difference between that and total blindness, people whose eyes have degraded to such a degree most certainly do.

If my parents couldn’t have afforded my surgery, I still had the money to pay for it BUT I’m saving up for an A clarinet so they paid for the diagnosis/treatment, I am not on centrelink either. Do Centrelink give him youth allowance considering their situation? It sounds like they don’t (it more than easily lets you pay for university), but I don’t understand why not, and why he didn’t work as a teenager considering how much it could’ve helped their situation and the fact that he may have known he wanted to go into esports then (a notoriously low paying field).

‘Since the middle of last year, for example, Nick has been battling depression after a lack of funds forced him to drop out of university.’

The fact that he’s already dropped out of uni due to their situation seems awfully ironic considering it was due to a lack of money, so going into esports doesn’t seem like the best thing to do considering how hard it is to form some form of a living within the field.

‘That seems an astonishingly cold view to take, especially given the last fortnight of controversies about misogyny and the Dead Island nonsense.’

What does this have to do with anything in the article?

Edit: Also note that on the other forum he said his seasonal job just finished; how much was he working?

I’m also surprised he said centrelink wouldn’t support him as his parents joint income was above $40,000 but I thought you had to reapply at the beginning of every year?