Keratoconus.........anybody?

[BADWIN BING]

Hey guys, sorry for my absence of late. These last 2/3 months have dealt me a shit pack of cards. The latest setback concerns my son, Jack 16yrs, who has been diagnosed with a serious eye condition which effects the cornea and, in most circumstances, leads to blindness. We have just been informed that his condition is in an invanced stage and will only get worse.

We were initially informed that a cornea transplant was his only hope.

However we have recently been informed of a pioneering new develpment with a, supposedly, 90% success rate. It's quite new here in the UK but has been used in US several times with great results.

Due to my wifes profession we have managed to fast track the surgery and he's booked in next Wednesday 28th.

The reason I'm posting this is because the web doesn't throw up too many results. I know that this is a long shot but are there any members who have or know someone with this condition?

The pocedure is not available on the NHS. We were told we may be able to apply for funding but it could take months, even years! It will cost us an arm and a leg to have it done privately. It's a no-brainer......

Many a time I've come close to buying a £4k gen PO, backed out and settled for the rep. When it comes to my childs health I don't care if it's 4k or 400,000k. I'd sell my car, my house, anything to put this right.

Thanks for reading.........BB

http://www.youtube.com/watch?feature=player_embedded&v=7l54xJdI2rc

 

[Glimmer]

So sorry to hear this. Don't know anything about this illness unfortunately, all I can say is best of luck to you and your family and I hope for a full recovery. Hopefully some other members will have more insight about the condition than myself.

 

[BADWIN BING]

Thank you.

 

[rsh]

Bb
The procedure you must be contemplating is probably collagen cross linking
how did you guys come to find out about the condition?
What is his vision? Do you have his prescription?
Relax take a deep breath kc is a slow disease

 

[BADWIN BING]

Bb
The procedure you must be contemplating is probably collagen cross linking
how did you guys come to find out about the condition?
What is his vision? Do you have his prescription?
Relax take a deep breath kc is a slow disease

It was picked up by his optician during a routine eye examination. She referred him to our nearest eye hospital. It's been going on for 12 months now. Only recently were we informed how serious the condition is.

He has virtually no sight in his left eye. You are right about the cross linking, that's what he is is having done next week. As a parent I'm concerned about the success rate and long term implications.

Thanks for replying.......BB.

 

[tommy_boy]

You're doing the right thing by using all resources. Wish I could be of some technical help.

All the best. Keep us posted.

 

[Steelfish]

Unfortunately I have no knowledge of this condition but wish to extend you and yours all the very best my friend.

 

[BADWIN BING]

You're doing the right thing by using all resources. Wish I could be of some technical help.

All the best. Keep us posted.

Will do Tom, thanks my friend.

Unfortunately I have no knowledge of this condition but wish to extend you and yours all the very best my friend.

Cheers SF. Thanks to you too buddy.

 

[eyeguy]

BB
So sorry to hear about your son's condition. I know it is very scary with the possibility of blindness in the future.
I do agree with rsh that kc is usually a slow moving condition. I've known several people with keratoconus and depending on how far along there are a number of treatments that have shown to be successful. I've seen excellent results with special contact lenses and surgeons are also using corneal implants with great success. I've seen excellent results with corneal transplants but if you can avoid it by doing this less invasive procedure that's wonderful. All my best to you and your family and here's hoping for an excellent outcome for your son.

 

[rsh]

BB
collagen cross linking (CXL) basically strengthens the cornea, it sounds like the eye with no vision is probably a bit too advanced to be helped by this procedure.

If vision is not contact lens correctable, he would already need a corneal transplant. CXL is indicated in eyes with moderate KC and no significant scarring, and is preventive in nature thus no rush to get it done....I hope this helps. Good thing is this is simply a corneal issue and overall eye health and vision prognosis (granted with surgery) is very good versus some horrible thing like end stage glaucoma or macular degeneration

 

[trailboss99]

There you go BB, you ask for an expert and get two, I love this place

Mate I'm very saddened to hear this, you have had a crap hand this year and you don't deserve it. My thoughts and I'm sure those of the entire board are with you, your son and your family.


Col

 

[DenisSpa]

Wish you all the best.

 

[frigpig]

You know what we're all thinking.

I cannot help with any information but am always here for any support I can offer. All the best to your son and family. My family will be hoping for exactly that for yours.

 

[d4m.test]

Hey BB I'm sorry to hear about your son. I'm 19 myself and I was diagnosed with keraroconus about 9 months ago, although jacks case sounds allot more advanced than mine.

I felt pretty shitty myself when I got diagnosed and was told it was incurable. Although I caught my case early they told me it was likely to progress fastest in my late teens to late twentys and was told glasses or contacts until it got bad enough for the cornea transplant were my best bet. I was also told if I went private I could have some treatment to strengthen the cornea with eye drops and UV lights (already mentioned in a previous post I think) but it was likely to be pricey and only slow the procedure down so I didn't take it any further.

I'd love to hear more about this alternative procedure you have found. Sorry if it's already been mentioned or was in the video you posted I can't watch as I'm on my phone and its half 4 and I feel half dead. I saw the thread and had to post though.

I wish you and your family all the best and really hope things start working out!

Sent from my Optimus 2X using Tapatalk 2

 

[BADWIN BING]

Jeez guys, I'm overwhelmed with the response to this thread. Thanks for all the comments and well wishes. Special thanks to Tom for the PM.

BB
So sorry to hear about your son's condition. I know it is very scary with the possibility of blindness in the future.
I do agree with rsh that kc is usually a slow moving condition. I've known several people with keratoconus and depending on how far along there are a number of treatments that have shown to be successful. I've seen excellent results with special contact lenses and surgeons are also using corneal implants with great success. I've seen excellent results with corneal transplants but if you can avoid it by doing this less invasive procedure that's wonderful. All my best to you and your family and here's hoping for an excellent outcome for your son.

Thanks for the well wishes and advice, it's very much appreciated. Kudos my friend.

BB
collagen cross linking (CXL) basically strengthens the cornea, it sounds like the eye with no vision is probably a bit too advanced to be helped by this procedure.

If vision is not contact lens correctable, he would already need a corneal transplant. CXL is indicated in eyes with moderate KC and no significant scarring, and is preventive in nature thus no rush to get it done....I hope this helps. Good thing is this is simply a corneal issue and overall eye health and vision prognosis (granted with surgery) is very good versus some horrible thing like end stage glaucoma or macular degeneration

Thanks once again rsh, your advice and understanding of the condition has been invaluable.

There you go BB, you ask for an expert and get two, I love this place

Mate I'm very saddened to hear this, you have had a crap hand this year and you don't deserve it. My thoughts and I'm sure those of the entire board are with you, your son and your family.


Col

Cheers Col, words like that mean a lot at this moment. Thank you.

Wish you all the best.

Thanks.

You know what we're all thinking.

I cannot help with any information but am always here for any support I can offer. All the best to your son and family. My family will be hoping for exactly that for yours.

I appreciate that frig......thanks so very much my friend.

Hey BB I'm sorry to hear about your son. I'm 19 myself and I was diagnosed with keraroconus about 9 months ago, although jacks case sounds allot more advanced than mine.

I felt pretty shitty myself when I got diagnosed and was told it was incurable. Although I caught my case early they told me it was likely to progress fastest in my late teens to late twentys and was told glasses or contacts until it got bad enough for the cornea transplant were my best bet. I was also told if I went private I could have some treatment to strengthen the cornea with eye drops and UV lights (already mentioned in a previous post I think) but it was likely to be pricey and only slow the procedure down so I didn't take it any further.

I'd love to hear more about this alternative procedure you have found. Sorry if it's already been mentioned or was in the video you posted I can't watch as I'm on my phone and its half 4 and I feel half dead. I saw the thread and had to post though.

I wish you and your family all the best and really hope things start working out!

Sent from my Optimus 2X using Tapatalk 2

Sorry to hear that you have the same condition Ray. Stick around here and I'll update the thread with Jack's progress (fingers crossed) and I'll also send you a PM with the costs involved. Good luck.

 

[Phil G]

That's a tough call BB. You know we're all sending prayers and good vibs for your boy.

My best to you and yours. Keep us updated next Wednesday if you've got time.

Take care, Phil :thumbsup:

 

[TESLA760]

It's great to see the resource of information we have from our members here.

BB, best of luck to your family at this time. As a father, I know how much we worry about our kids. Hopefully your family can make it through this with good results.

 

[JellyJoe]

Hold strong the stronghold mate.
Best of wishes to your son and family BB.

Joe

 

[mydnytrydr]

BB, I'll keep your son and family in my thoughts and prayers...Stay strong and know that you have legions of well-wishers expecting the best outcome for your son...

Best Wishes,
Vince

 

[revhrd]

I am sorry BB my thoughts go with you and your family as well.