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(Des Moines Register)   Family fights rare disease that has blinded 61 members of the family, and there is no true cure in sight   (desmoinesregister.com) divider line 58
    More: Scary, rare disease, Iowa, tandem, Hy-Vee, eye test, electric fences, cure, eye doctor  
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5883 clicks; posted to Main » on 17 Jun 2013 at 3:21 AM (1 year ago)   |  Favorite    |   share:  Share on Twitter share via Email Share on Facebook   more»



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2013-06-17 03:01:51 AM
Does not see what subby did there:

cmsimg.desmoinesregister.com
 
2013-06-17 03:22:22 AM
Stop wrapping it up like a douche.
 
2013-06-17 03:29:54 AM
Test all the family members for the disease and counsel the one's who test positive for the gene not to have children or to adopt. Should be able to fix things in one to two generations.
 
2013-06-17 03:33:30 AM

Arthur Jumbles: Test all the family members for the disease and counsel the one's who test positive for the gene not to have children or to adopt. Should be able to fix things in one to two generations.


Eugenics be wrong because like nazis and shiat
 
PKY
2013-06-17 03:34:17 AM
Can giving up having babies with family members be the cure?
 
2013-06-17 03:41:35 AM
Are you ready!!!!!

static.nme.com
 
2013-06-17 03:51:16 AM
Jeez, subby.  A bit harsh eh?  I hope some day you and your family face a similar tragedy.  Maybe it will open your eyes and instill some compassion.
 
2013-06-17 03:56:41 AM

Mock26: Jeez, subby.  A bit harsh eh?  I hope some day you and your family face a similar tragedy.  Maybe it will open your eyes and instill some compassion.


I don't think Subs can visualize that far in the future.

/ Reminds me of my friend Rod

// Gonna get an ice cream cone and see my way to sleep
 
2013-06-17 03:57:00 AM

Mock26: Jeez, subby.  A bit harsh eh?  I hope some day you and your family face a similar tragedy.  Maybe it will open your eyes and instill some compassion.


Subby nor family will ever learn.

Inapt pupils.
 
2013-06-17 04:04:53 AM

Arthur Jumbles: Test all the family members for the disease and counsel the one's who test positive for the gene not to have children or to adopt. Should be able to fix things in one to two generations.


Hey hey hey. With that attitude we would never have had daredevil. An entire family of blind crime fighters can be a valuable thing.
 
2013-06-17 04:05:57 AM
At least it's not Fatal Familial Insomnia.
 
2013-06-17 04:06:25 AM
Darwin's been asleep at the wheel.
 
2013-06-17 04:31:33 AM
Here's an idea...how about everyone in that gene pool get sterilized so they don't keep passing the tragedy on to future generations?  Problem solved.
 
2013-06-17 04:48:03 AM

Ball Peen Hammer Laxative: Are you ready!!!!!

[static.nme.com image 396x368]


i lol'd

/window seat, please
 
2013-06-17 04:49:17 AM
Huh.  Eye-destroying evilness runs in my family.  My grandfather is blind, my mother one sliver away from it (they took the lenses out of her eyes), and my aunt only somewhat better than her.  The docs always classify it as some kind of uveitis.  I wonder if this could be a related thing.
 
2013-06-17 05:09:49 AM

Bonanza Jellybean: At least it's not Fatal Familial Insomnia.


Or Huntington's, which is far more prevalent.
 
2013-06-17 05:31:31 AM
Sounds like the family is a evolutionary dead end. Unless they keep breeding and spreading the abnormality to wider populations, then, well, there'll be a lot more miserable people in the future.

fc09.deviantart.net
 
2013-06-17 06:03:47 AM
If I have a kid it will go blind. Gee, whys all my kids blinds?
 
2013-06-17 06:06:54 AM

Lionel Mandrake: Does not see what subby did there:


subby started the done, you seem to have the one

/nicely done
 
2013-06-17 06:15:13 AM
is trying to tell your family tree something...

news.brown.edu
 
2013-06-17 06:22:06 AM
Anne Frank had he same disease.  Affected her hearing, too.
 
2013-06-17 07:02:27 AM
If I knew my genes were defective, I would not have children. End of story.
 
2013-06-17 07:06:02 AM
Simple solution: adopt. You could have stopped the genetic blindness if you had started adopting instead of reproducing. There was nothing  makingyou reproduce. You lot were just too self-centered and chose biological relationship with the children over a higher quality of life for the children. It was a choice, and you might as well have made them blind yourself.
 
2013-06-17 07:11:01 AM
Stop breeding.
 
2013-06-17 07:15:26 AM
How could someone ethically have a child if there was a 50% chance it would have something as debilitating as blindness?
 
2013-06-17 07:45:02 AM
Sounds as if they do more than barbeque at family reunions.
 
2013-06-17 07:50:27 AM
Hey, don't blame the family because the medical community is too stupid to find a cure.
 
2013-06-17 08:07:36 AM

Alonjar: If I knew my genes were defective, I would not have children. End of story.


I am personally happy that my father opted to pass his "defective genes" on to me.  If he had not, I would not exist and I like existing, thank you very much.  What did I get?  Faciosapulohumoral Dystrophy (FSHD) that is usually fatal in my family.

I teach algebra at a University and I tutor in a number of other subjects.  When I say I teach algebra, I mean it.  I help my students understand it instead of berating them for not already knowing it.  I have also helped many students get through tough classes that they might not have passed if I did not tutor them.  They could not have gone to another tutor, because I was often the tutor of last resort.  Students who had met with other tutors and were not successful were sent to me.  So, I think that I am not the only one that is happy that my father chose to breed.

Even though I teach algebra, my first graduate degree is in molecular biology.  I am personally working on a treatment for FSHD.  So far, I am not in a wheelchair and I am unlikely to be.  I show no signs of dropping dead anytime soon even though I have passed my expiration date.  I had a biological daughter as the result of a rape.  She has FSHD also and has also brought positive things to many people's lives.  Unfortunately I was not able to have biological children with my husband, so we adopted a beautiful little girl who was in need of a good home.  I'm pretty sure I have made her life better.

You can think what you want, but I am not just a disease.  There are many people on this planet who are better off because I am here.  I'm not saying that I am amazing, I am just saying that everyone has something to contribute.  You never know what a small impact can lead to.  It is possible that one of my students will discover the cure for cancer or something.  My adopted daughter may become president of the United States and bring about world peace.  Who knows.  All I know is that I personally have helped many people overcome some hurdles that may have been a barrier to their success.

Oh, and Steven Hawking.
 
2013-06-17 08:17:51 AM

zanni: Alonjar: If I knew my genes were defective, I would not have children. End of story.

I am personally happy that my father opted to pass his "defective genes" on to me.  If he had not, I would not exist and I like existing, thank you very much.  What did I get?  Faciosapulohumoral Dystrophy (FSHD) that is usually fatal in my family.

I teach algebra at a University and I tutor in a number of other subjects.  When I say I teach algebra, I mean it.  I help my students understand it instead of berating them for not already knowing it.  I have also helped many students get through tough classes that they might not have passed if I did not tutor them.  They could not have gone to another tutor, because I was often the tutor of last resort.  Students who had met with other tutors and were not successful were sent to me.  So, I think that I am not the only one that is happy that my father chose to breed.

Even though I teach algebra, my first graduate degree is in molecular biology.  I am personally working on a treatment for FSHD.  So far, I am not in a wheelchair and I am unlikely to be.  I show no signs of dropping dead anytime soon even though I have passed my expiration date.  I had a biological daughter as the result of a rape.  She has FSHD also and has also brought positive things to many people's lives.  Unfortunately I was not able to have biological children with my husband, so we adopted a beautiful little girl who was in need of a good home.  I'm pretty sure I have made her life better.

You can think what you want, but I am not just a disease.  There are many people on this planet who are better off because I am here.  I'm not saying that I am amazing, I am just saying that everyone has something to contribute.  You never know what a small impact can lead to.  It is possible that one of my students will discover the cure for cancer or something.  My adopted daughter may become president of the United States and bring about world peace.  Who knows.  All I know ...


We aren't just considering the children.  FTFA, the whole family is on disability.  Not only are they making the selfish decision to have a child they are unable to support. eventually they become unable to support themselves.  Also, if you want to get philosophical, the only reason you, and anyone, likes existing is because he or she already exists.  If someone never existed, someone would not feel upset at not existing.  We are past the point where we need people to reproduce.  We have too many people.  If someone really and truly wants to be a parent, they should adopt until all those kids are gone.
 
2013-06-17 08:24:27 AM

Ball Peen Hammer Laxative: Are you ready!!!!!


Heh heh heh
 
2013-06-17 08:26:26 AM

Arthur Jumbles: Test all the family members for the disease and counsel the one's who test positive for the gene not to have children or to adopt. Should be able to fix things in one to two generations.


Well they identified the gene finally last year, which means all family members will be getting tested and counselled. They don't tell you not to have kids though, they just tell you what the odds involved are.

I do gene discovery research for rare genetic diseases, we have a bunch of families with a similar, but more common disease that similarly leads to blindness but isn't 100% guaranteed in all people with the genetic mutation. Still pretty awful.

ByOwlLight: Huh.  Eye-destroying evilness runs in my family.  My grandfather is blind, my mother one sliver away from it (they took the lenses out of her eyes), and my aunt only somewhat better than her.  The docs always classify it as some kind of uveitis.  I wonder if this could be a related thing.


There are quite a few genetic disorders that result in blindness. This particular one, as well as the ones I have worked on, are due to defects in blood vessel formation. But things like say Macular degeneration are far more common.

Ahvren: Simple solution: adopt. You could have stopped the genetic blindness if you had started adopting instead of reproducing. There was nothing  makingyou reproduce. You lot were just too self-centered and chose biological relationship with the children over a higher quality of life for the children. It was a choice, and you might as well have made them blind yourself.


Before they identified the gene no one would know whether they were affected or not, just that they had a 50/50 chance. From the description vision loss might not start until you are already an adult and have had kids.

orbister: Sounds as if they do more than barbeque at family reunions.


It's a dominant disorder. Meaning you only need a single defective copy of the gene to have the disease not two. So no, there is zero implication of inbreeding.
 
2013-06-17 08:28:48 AM
Inbreeding a problem? noooooo.  Go back to sheeeeeeep.
Recessive genes only become dominant when "stacked"
or-
"gene that produces its characteristic phenotype only when its allele is identical "

Stop being selfish and either learn to polish the bishop or move out of the region.
In the mean time, it's keeping researchers in spending money so there's that.
 
2013-06-17 08:43:50 AM

zanni: Oh, and Steven Hawking.


Over 90% of people with adult-onset ALS (like Hawking) have no direct family history of the disease. That, coupled with the fact that there was no geneic testing at the time (and still none for ALS), makes it kind of hard to decide not to pass on a strong possibility of an inherited condition if you don't know it's there
 
2013-06-17 09:05:08 AM

give me doughnuts: zanni: Oh, and Steven Hawking.

Over 90% of people with adult-onset ALS (like Hawking) have no direct family history of the disease. That, coupled with the fact that there was no geneic testing at the time (and still none for ALS), makes it kind of hard to decide not to pass on a strong possibility of an inherited condition if you don't know it's there


Bingo, I'm glad you're ok with being born with a shiatty disease, but that doesn't change the fact that it should be bred out of the population. I'm happy you were unable to have children, it would have been unfair to them. Adopting on the other hand is incredibly selfless and I commend you.

 
2013-06-17 09:09:37 AM
It's a dominant disorder. Meaning you only need a single defective copy of the gene to have the disease not two. So no, there is zero implication of inbreeding...

FTFA: his mother and father were second cousins
 
2013-06-17 09:12:18 AM

Meethos: give me doughnuts: zanni: Oh, and Steven Hawking.
Over 90% of people with adult-onset ALS (like Hawking) have no direct family history of the disease. That, coupled with the fact that there was no geneic testing at the time (and still none for ALS), makes it kind of hard to decide not to pass on a strong possibility of an inherited condition if you don't know it's there
Bingo, I'm glad you're ok with being born with a shiatty disease, but that doesn't change the fact that it should be bred out of the population. I'm happy you were unable to have children, it would have been unfair to them. Adopting on the other hand is incredibly selfless and I commend you.



I guess you missed the part where she said she had a biological daughter as a result of a rape. Nice sensitivity there.
 
2013-06-17 10:14:16 AM

Mock26: Jeez, subby.  A bit harsh eh?  I hope some day you and your family face a similar tragedy.  Maybe it will open your eyes and instill some compassion.


Because nothing says compassion like wishing tragedy on someone.
 
2013-06-17 10:36:32 AM
Found your problem. FTA: "It was present on both sides of Jerry Jackson's family because his mother and father were second cousins"

/Can't believe I'm the first to point it out.
 
2013-06-17 10:38:34 AM

Jack Spectacular: Found your problem. FTA: "It was present on both sides of Jerry Jackson's family because his mother and father were second cousins"

/Can't believe I'm the first to point it out.



ifly4fun: It's a dominant disorder. Meaning you only need a single defective copy of the gene to have the disease not two. So no, there is zero implication of inbreeding...

FTFA: his mother and father were second cousins


Or I could be a not so close second
 
2013-06-17 10:53:55 AM
I'm not sure how I feel about people who knowingly pass on their bad genes purposely. It's like the annoyance I felt at a woman who complained that her children had a skin condition that was passed on genetically from their father, it is dominant. It's like you entered this knowingly, STFU and deal with it. The children I feel a bit for, but not the woman. Same thing.

I think I'd get genetic counseling if I chose to reproduce (and it wasn't an accident obviously, then it'd be a bit too late).
 
2013-06-17 11:05:33 AM
I could understand 61 Iowans going blind after the Des Moines Fark Party, but before? No explanation.
 
2013-06-17 11:07:03 AM

zanni: Alonjar: If I knew my genes were defective, I would not have children. End of story.

I am personally happy that my father opted to pass his "defective genes" on to me.  If he had not, I would not exist and I like existing, thank you very much.  What did I get?  Faciosapulohumoral Dystrophy (FSHD) that is usually fatal in my family.

I teach algebra at a University and I tutor in a number of other subjects.  When I say I teach algebra, I mean it.  I help my students understand it instead of berating them for not already knowing it.  I have also helped many students get through tough classes that they might not have passed if I did not tutor them.  They could not have gone to another tutor, because I was often the tutor of last resort.  Students who had met with other tutors and were not successful were sent to me.  So, I think that I am not the only one that is happy that my father chose to breed.

Even though I teach algebra, my first graduate degree is in molecular biology.  I am personally working on a treatment for FSHD.  So far, I am not in a wheelchair and I am unlikely to be.  I show no signs of dropping dead anytime soon even though I have passed my expiration date.  I had a biological daughter as the result of a rape.  She has FSHD also and has also brought positive things to many people's lives.  Unfortunately I was not able to have biological children with my husband, so we adopted a beautiful little girl who was in need of a good home.  I'm pretty sure I have made her life better.

You can think what you want, but I am not just a disease.  There are many people on this planet who are better off because I am here.  I'm not saying that I am amazing, I am just saying that everyone has something to contribute.  You never know what a small impact can lead to.  It is possible that one of my students will discover the cure for cancer or something.  My adopted daughter may become president of the United States and bring about world peace.  Who knows.  All I know ...


Also possible results of your non-existence: Your parents made a child's life better (possibly even worse) or were able to contribute better to any existing siblings you may have. If they didn't have children, had a higher quality of life without you.  Someone else fills the spot you took, is brilliant and smarter than you, is average, is equal to you. Your adopted daughter is highly unlikely to become president, it's true but another chance is she was adopted by a loving family as well. Your husband had biological children (if he's not infertile or something). Your students never had a missed opportunity because all things equal those spots you occupy would be occupied by someone else.

Had you never existed, it really wouldn't matter because YOU WOULD NOT EXIST. Like Harry Potter. You can try and justify your existence all you want, what it boils down to is your parents reproduced and you, in unfortunate circumstances, reproduced.
 
2013-06-17 11:19:44 AM
The cure: stop breeding. Disease will be wiped out within just one generation.
 
2013-06-17 11:33:15 AM
I think this family needs to go gene masseth itself.
 
2013-06-17 11:44:04 AM
media.tumblr.com
 
2013-06-17 11:44:27 AM

Ball Peen Hammer Laxative: Are you ready!!!!!

[static.nme.com image 396x368]


Who is that?
 
2013-06-17 12:08:29 PM

CarnySaur: Hey, don't blame the family because the medical community is too stupid to find a cure.


This condition is actually 100% preventable with a simple and safe vaccination, but the death panels won't let anyone have it...

//doinitrite?
 
2013-06-17 12:50:01 PM

rkiller1: Anne Frank had he same disease.  Affected her hearing, too.


That's why I came on to this thread.
 
2013-06-17 12:55:22 PM
"Doctors would later discover the mutated gene originated in the family going back to Scotland. It was present on both sides of Jerry Jackson's family because his mother and father were second cousins. "

This, is why you don't fark your cousins.
 
2013-06-17 01:13:21 PM

Maggie_Luna: I'm not sure how I feel about people who knowingly pass on their bad genes purposely. It's like the annoyance I felt at a woman who complained that her children had a skin condition that was passed on genetically from their father, it is dominant. It's like you entered this knowingly, STFU and deal with it. The children I feel a bit for, but not the woman. Same thing.

I think I'd get genetic counseling if I chose to reproduce (and it wasn't an accident obviously, then it'd be a bit too late).


Wow.  Did any of you people read the article?

The disease doesn't manifest until you hit ~50 years old.  It hit the recent daughters earlier while in their 30s.  For some family members it didn't hit them until their 60s.
 

This means a couple things.  First, you can live a good 2/3 of your life with perfect eyesight.  So it's not like your kids will be miserable.  And two, it means by the time you've already had kids, or even two generations worth of kids, then the disease is manifested.  So it's not like they necessarily had a priori knowledge about it.

Should you not live your life normally for the first 50 years because you may lose your eyesight for the 50+ years?  Tough call.
 
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