My cousin recently found out he's going blind from Retinitis Pigmentosa ( http://www.blindness.org/visiondisorders/causes.asp?type=3 ) Unless a cure is discovered he will most likely be blind by the time he's 40 (he's 20 at the moment). I'll be staying with him and his parents this weekend out at their beach house. Its the first time I'll be seeing him after hearing the news.

Should I say anything about it, or act like nothing's wrong? Not sure what the best approach is here.

8/11/2006 1:07:43 PM

that's still a lot of time left

8/11/2006 1:08:05 PM

take him to a strip club and dont mention anything

8/11/2006 1:11:01 PM

I know but its still a huge blow. I think anyone on this board would be devastated, whether or not they have another 20 years left. The doctors also said it could happen in as little as 10. He's already had night blindness for the past few years.

8/11/2006 1:11:34 PM

interestingly enough, last night's without a trace episode focused on a character who had the same ailment.

sucks for your cousin though. Whether you bring it up or not probably depends a lot on your cousin's personality and how close you are to him. Some people want to talk about their ailments, and others prefer to not bring attention to those things.

8/11/2006 1:11:37 PM

Well he's a fairly reserved guy from what I can tell. We're not incredibly close since I've lived in NC most of his life while he's in NJ. Him and my brother are a lot closer since they're both 20. My brother will be up at the beach as well. Guess I'll follow his lead.

8/11/2006 1:14:21 PM

I wouldn't mention it if possible.

8/11/2006 1:17:56 PM

I saw a show once where this guy had been blind since he was a kid and they did an eye transplant - took a couple surgeries, but it worked. I'd research that and see if he would be a candidate, maybe find out if his insurance company would pay for it.

Don't bring up the topic but don't avoid it if he does. Don't go out of the way to act like nothing is wrong but don't be the sour one either. Just go have fun like you normally would, although in the interest of sensitivity I would avoid activities that refer directly to sight like "Hey Bob let's go see a movie" or "let's go watch (insert something interesting)"

If you go to a strip joint, I'd say find one that'll let him touch and have him blindfolded

8/11/2006 1:18:12 PM

You look upset, Bill. What's wrong?
Oh, didn't you hear? I'm terminal.
Oh my gosh, no!
Yes, I'm going to die and that's that. The psychic told me I only have 43 more years to live.
I'm sorry, can I do anything for you?
Can you get me a soda?
No.

[Edited on August 11, 2006 at 1:26 PM. Reason : i]

8/11/2006 1:24:47 PM

Quote :

"I wouldn't mention it if possible."

I agree. My little brother's girlfriend has cystic fiberosis and we all know that she more than likely won't live past 30. It's a terrible situation, but we just act like nothings wrong and go on living. People my think that that is not good, but it works wonderfully. She lives life like any other normal 17 year old.....



[Edited on August 11, 2006 at 1:26 PM. Reason : ha, i saw that the other day^]

8/11/2006 1:25:41 PM

^I don't think I could handle something like that, it would seem fine now but you would be setting yourself up for a world of hurt when she passed.

8/11/2006 1:28:25 PM

^yeah, well the thing is that he fell for her before he knew about it

and seriously, i think hes in love with her

shes been in the hospital for about 2 weeks now and he's spent every night with her



i mean even when he found out, he couldnt break it off with her because of that, you know?

[Edited on August 11, 2006 at 1:31 PM. Reason : and also we HAVE to act normal, who wants to live each day reminded of that?]

8/11/2006 1:29:55 PM

There was an episode like this on Baywatch with Hobies girlfriend

8/11/2006 1:30:47 PM

^lol

Thanks for the advice. I guess I'll act like everything's fine if they don't bring it up. (My aunt's already mentioned how hard things have been recently).

My cousin is seeing several specialists on the disease in and around the NYC area so I'm sure he'll be in the best possible hands.

[Edited on August 11, 2006 at 1:32 PM. Reason : k ]

8/11/2006 1:31:20 PM

^good luck with everything babe

8/11/2006 1:32:22 PM

Maybe they will have some badass bionic eye by the time he is 40. Put the terminator spin on it so he feels better.

I mean who wouldn't want a badass bionic eye.

8/11/2006 1:37:11 PM

^^Thanks. I'm sure we'll have a good time boating and drinking this weekend! (not together of course!)

^perhaps

[Edited on August 11, 2006 at 1:38 PM. Reason : k ]

8/11/2006 1:38:38 PM

I use humor to get through life problems :shrugs:

8/11/2006 1:39:59 PM

That sucks, man.

What I suggest is, just let it slide. If he wants to talk about it, he will. Be available and open for him if he needs it.

That's typically the best way to handle these situations.

8/11/2006 1:44:22 PM

Sorry but I just sent you a really lengthy PM

My mom has RP. If your cousin is expected to be blind by age 40, it means he has the more quickly advancing version, autosomal recessive, which is what my mom has. She was completely blind by 40, probably closer to around 35.

Night vision loss and tunnel vision occur first, as the pigment clumping continues to block sight out.

This version of RP only affects around 150,000 people in the US. It's an amazingly small number.

Your cousin's siblings, if there are any, have a 25% chance of having RP as well. So they all need to be monitored when having eye exams.

He'll probably be depressed about it for a while but once you notice he's adjusting to the idea there shouldn't be any problem using the verbs "see" and "watch." I joked to my mom that I almost bought a tshirt that said "My mom is a biker" b/c I thought it was funny irony, and we always use those kinds of verbs with her.

For my mom there isn't really anything to do to restore her sight just because of the nature of the disease. There are most likely some processes/vitamins/items that your cousin could use while still able to see that could delay blindness.

I'm kind of reiterating stuff I said in the PM, but this is partially for people you may know on this board, and others that may just be curious about it.

I've done large papers in Genetics and Cellular Biology on RP, and have been researching it lately because my uncle has been diagnosed with it (I think he's around 27 yrs old but waited before letting family known about it) and wants to know the likelihood his daughter will have RP. It's a sucky disease. Lots of research is being done on it and with trying to get sight restored but there really isn't much out there, very unfortunately.

His family and future wife/kids will have to acquire a lot of patience, that's for sure.

Fortunately for him he's a guy. My mom will run into doors and such and get a black eye or other bruises, and neighbors have called Social Services on my dad when i was a kid. It was so irritating.

[Edited on August 11, 2006 at 1:52 PM. Reason : okay i just found out he's adopted so there's a very low chance it's from your family]

8/11/2006 1:48:36 PM

"Look, I can see where youre coming from. We all saw the signs, but it's going to be hard to watch something like this happen. Keep your eyes peeled for treatment options, and never lose sight of hope. Your vision to survive will be your guiding eyes..."

yeah don't say anything like that to him

8/11/2006 2:12:24 PM

I don't think there's a need to say anything unless it comes up in conversation. If it does, just express that you're sorry he's going through this and to let you know if there's anything you can do.

You're not "acting like nothing is wrong" because really, nothing has changed except now there's a name with the condition. Did you tell him you were sorry for his night blindness before? No. But you were probably cognizant of it.

8/11/2006 2:13:03 PM

if he wants to talk about it, he'll talk about it
if he doesn't talk about it, i wouldn't bring it up

8/11/2006 2:20:29 PM

i hope he can find some peace and serenity in his life and i will pray for him.

8/11/2006 2:22:17 PM

i hope his singing career takes off

8/11/2006 2:25:39 PM

With the rate of medical advancement, I think we'll all be surprised at what comes out in the next five or ten years. There's always hope.

8/11/2006 3:02:07 PM

I wouldn't say anything, let him talk about it if he wants

8/11/2006 3:07:16 PM

my grandfather had that, but it didn't start bothering him until he was about 50. He died at 63 and was not quite completely blind by then.

8/11/2006 5:32:23 PM

I'd shoot myself.

8/11/2006 6:08:28 PM

tell him to live fast and die young so he wont have to go blind

8/11/2006 6:55:05 PM

that would be tough to get that kind of news

8/12/2006 6:49:12 PM

buy him a pup, that will be his eventual seeing eye dog.....that is the best thing you can do....

8/12/2006 6:56:23 PM

I went through the same exact thing with my cousin less than 4 months ago, except she's expected to be blind within 3 years.

The best thing you can do is to gently let them know that you know about their illness. Gauge the reaction from there. If they want to talk, go ahead and let them. If they don't just, tell them that you're there if they ever need someone to listen.

Then leave it at that. The family closest to the individual will pick it up from there.

8/12/2006 7:03:00 PM

Make sure he stays away from Bjork.

8/12/2006 9:20:54 PM

seriously, grow up. you should be able to deal with this without tww.

edit:

Quote :

"who wants to live each day reminded of that?"

exactly. whether he has dealt with it yet or not its eventually going to happen. let the poor bastard live a life he can enjoy instead of drowning in your sorrow.

[Edited on August 13, 2006 at 3:11 AM. Reason : *]

8/13/2006 3:07:44 AM

Joie-has your brother's girlfriend considered a transplant? Lung transplant procedures are amazing these days and my dad knows a LOT of CF patients who have had them and been successful.

I would just take things easy and if they bring it up, listen and be attentive. My old roommate's mother has this and is on her way to complete blindness and I had to let her come to me about it. When she did, I listened and comforted her. It's hard but it's good you are attempting to be there for him and being understanding. Best of luck.

8/13/2006 3:19:53 AM

Lung transplants are a very rare option, and do nothing more than maybe extend a person's life by 3 or so years.

8/13/2006 3:23:31 AM

too much masturbating?

8/13/2006 5:14:43 AM

lol roddy - 1) that pup would be too old by the time he could benefit
2) there's a lot to training a seeing-eye dog

8/13/2006 10:08:52 AM

if you didn't bring this up before knowing he couldn't see at night, why bring it up now? at most, tell him you heard and you're sorry. leave it at that.

8/13/2006 10:51:55 AM

Quote :

"Lung transplants are a very rare option, and do nothing more than maybe extend a person's life by 3 or so years."

This is completely inaccurtate information. My father had a double lung tx at Duke along with many many many others and I went to many meetings, lectures, and classes to learn what was going to be happening. The extention of life is much more significant than three years.

8/13/2006 11:38:52 AM

"The long-term results have been somewhat discouraging with a 5-year survival of approximately 50%. The major causes of mortality late following lung transplantation are bronchiolitis obliterans, infections, and malignancy."

I am not saying it doesn't work. It is a last resort thing for many and the survival rate is about 70% for the first year, going down progressively for subsequent years. Not to mention that you can not get rid of CF completely as of now even after a transplant.

8/13/2006 11:48:53 AM

^So roughly 50% of patients don't make it past 5 years but the majority make it to 8-10 which is double-triple the "three year" addition that you proposed. Plus, that 50% includes all those who are going back for another transplant and those who die during surgery. There is also another surgery (for COPD/emphysema specifically), LVRS, that can be done prior to a TX that provides you with another 3-5 years. You can look at internet webpages and wedmd all you want and spout off facts to me but I've talked to the head of surgery at Duke which is ranked among the highest in tranplant facilities in the US and I will choose to believe him over those sites.

And you act like just because there is no cure, you should rule out any possibility for extension of life....who knows when they may find a cure? Who knows how long you will live? I was simply providing another possible venue for exploration that I have had a lot of personal experience with.


Anyhow, back on topic...I'd like to know what happened if you don't mind sharing upon your return.

8/13/2006 12:27:17 PM

There is nothing medically wrong with what I posted. I know about CF, and don't get where you got the idea that all I did was research on the Internet.

Not many people can afford to be on lung transplant lists, and those that can are usually put on them as a last resort. There are too many complications arising out of organ transplants, more so in the case of CF.

"the majority make it to 8-10 which is double-triple the "three year" addition that you proposed."

I dunno where you got that statistic from.

8/13/2006 12:58:13 PM

Quote :

"Anyhow, back on topic...I'd like to know what happened if you don't mind sharing upon your return."

You can pm anything else gargs.

8/13/2006 1:00:10 PM

Quote :

"seriously, grow up. you should be able to deal with this without tww"

WTF? Maybe I was just curious what you people'd say. Believe me I'd do just fine on my own

Anyway, things were fine this weekend, except for the telephone pole he hit when making a right turn. I'm not sure if its his peripheral vision going away, or his sucky driving

8/15/2006 11:05:21 PM

you should have yelled at him and made comments about how he must be "blind as a bat"

8/16/2006 12:34:38 PM

Haha, well it was kinda funny. He hit this telephone pole, down the street from his summer house...thats he's been going to all his life.

He was like "what was that?!?" I was like, "a telephone pole".

8/16/2006 1:02:24 PM