December 11, 2013 2:22 pm at 2:22 pm #1021012
DY: Why are you okay with taking carrier status into account when it’s a good thing, but not when viewed in a negative light?
My point is just that if you know about something, it comes into account. Does it make a difference overall? Not necessarily. But people shouldn’t say that it doesn’t matter. If Hashem let you find out about something, it’s to send you a message of some sort, and not ignore it.
This is not about my personal views.December 11, 2013 4:30 pm at 4:30 pm #1021013
I was joking when I said you should davka marry a carrier.
This is about my personal view; I don’t think we’re supposed to live our lives based on remote possibilities.
Do I know for sure that it wouldn’t affect my thought process if I knew?
No, but I would hope not.
Is it a good idea to have a public database listing everyone’s carrier status? Of course not, that’s not my argument.December 11, 2013 4:42 pm at 4:42 pm #1021014
Hashem has given us the tools to help prevent certain diseases, immense pain, and even the death of small children. If all you have to do is a small blood test, why would one put themselves and possibly their children in such a painful situation? (I have the same question about why people dont vaccinate their children, but thats another question for another time…)
One of my children is deaf. I worry about the possibility of having another child that is deaf. I worry if its genetic. I worry about a possible surgery. I worry and worry and worry. A mother never stops worrying. Why would one put themselves in the position of having such anxiety over a more serious and most of the time fatal situation?!December 11, 2013 6:25 pm at 6:25 pm #1021015
Being a carrier of genes is less worse a problem than carrying bad middos. If the guy has a good heart, and a clear torah head, then yes I would marry them. Life is short, chances of cropping up a kid with genetic deficiencies are slimmer than not. Hashem is in charge. You just pray”
You are comparing apples with toothpaste (not even with oranges). What have good middos to do with bad genes??? It’s not an either or situation. If someone is a carrier, he or she should NOT marry and reproduce with another carrier, because, depending on the gene they carry, they are gambling with every pregnancy. And though THEY might feel it is perfectly ok to trust in Hashem (as do I), that does not mean that if you step into empty space, you’re gonna fly. Hashem CAN and DOES do miracles every day all day. But most of us are not worthy to see a miracle of the magnitude that one would require to save the life of a baby born with Tay-Sachs, Disautonomia, etc. These are ALL preventable diseases, simply by not being meshadeich two people who carry that gene. It is not fair to the unborn children, to say Gott Vet Helfen. I would marry a carrier, but only if I were not also one, and only if it required genes from both parents in order for there to be a 25% risk (which is too high in my book) that the child would be born diseased. BTW, with what is going on nowadays with gene therapy, that will BE”H eliminate these issues, some day.December 11, 2013 9:46 pm at 9:46 pm #1021016
Good discussion here on this thread.December 12, 2013 7:22 pm at 7:22 pm #1021017
oomis: +1!December 12, 2013 8:52 pm at 8:52 pm #1021018
TY, Miritchka.June 24, 2014 10:34 am at 10:34 am #1021019
As people who are born are far more likely to find shidduchim than others are, it actually helps your kids’ chances if you get married.October 3, 2018 10:24 am at 10:24 am #1597769
Here’s another one we were completely unaware of until it was mentioned on a date; LOTS (late onset Tay Sachs). From the little bit we’ve researched, it can be even worse then MS as a degenerative disease. This was caused by the parents neglect to be tested, and although this child is not a carrier, he/she is already suffering early symptoms. It is tragic that the shidduch went this far.October 3, 2018 4:18 pm at 4:18 pm #1598022
Doesn’t the religious community in America have Dor Yesharim? In Israel it’s something that NO ONE goes on shidduchim before doing. They basically test you for all these diseases, keep the results secret, and you can ask to match up the results of any couple, (usually it’s done even before the first meeting) and see if there is a significant risk in any of these diseases…October 3, 2018 6:56 pm at 6:56 pm #1598213
“This was caused by the parents neglect to be tested”
No, this was csused by Gd. We have testing for a reason. We also have sitiations whete things seem to ‘slip through the cracks’ because that’s how Gd wanted it. There are probably thousands of problems that can come up that can’t be tested for in advance as well. It is not in our hands to make sure our children have only healthy offspring. Our job is to do our best and not point fingers when Hashem throws you a curveball. It’s so easy for us to *say* אין עוד מלבדו, but these are the times when Hashem wants us to prove we mean it.October 4, 2018 9:05 am at 9:05 am #1598380
Ysiegel, we certainly do have Dor Yesharim in the USA, and the young man and woman’s numbers were compatible. LOTS is caused when a parent is a carrier. A Dor Yesharim test is only to determine compatibility vis a vis genetic disorders. It will not show if a child is potentially suffering (or will in the future) this dreaded disease. There is very little research and no cure whatsoever for the late onset condition since, B”H, Tay Sachs has virtually been eradicated with the advent of testing. There are approximately 200 cases reported yearly, worldwide.
The couple chose to end the shidduch.October 4, 2018 10:38 am at 10:38 am #1598494
the young man and woman’s numbers were compatible
I’m confused. How does this work? The child can have the disease even if the parents weren’t carriers?October 4, 2018 1:11 pm at 1:11 pm #1598505
DY: as I understand it, the Bochur/Choson had the disease and wasn’t aware prior to the Shidduch. His and his Kallah’s numbers were compatible, meaning one of them (in this case the kallah) wasn’t a carrier. I believe he made a mistake when he wrote the boy wasn’t a carrier. His parents never tested.October 4, 2018 1:12 pm at 1:12 pm #1598509
WomanoutsideBrooklyn: Thank you for the explanation. I now realize that looking through the thread may have answered my question automatically..
DaasYochid: from what I gather from WomanoutsideBrooklyn’s explanation and from the actual name of the disease, it appears that this disease only develops later on in life and shows no sign of existing beforehand.
In other words, perhaps the parents were carriers, but in the child it won’t be picked up by tests because it needs to be developed before it’s picked up by tests…
Not sure if I am correct but that is what it seems to me…October 4, 2018 1:12 pm at 1:12 pm #1598549
To clarify on A woman outside’s post- The genetics of late onset/adult onset Tay Sachs is the same as infantile Tay Sachs- the same gene- HEXA- is mutated, the affected individual has 2 mutated copies, one from each carrier parent. There are many different mutations that can occur in this gene. In the infant form, this results in the absence of the gene product hexosaminidase A, so symptoms are most severe and observed early. In the adult version, there is a deficiency in hexosaminidase A, the, but some enzyme activity is present, so that the disease progresses slowly, and at different rates in different individuals depending on the actual enzyme levels.
From your story, it seems like one of the dating partners (let’s assume the boy) has the disease, ie is homozygous for one of the mutations. Apparently, his parents were not tested, and since he was asymptomatic during childhood, he did not know he had Tay Sachs. The girl is negative, not even a carrier, which is why their numbers are compatible- if they were to marry, then their kids would all be carriers but not have the disease. So what it boils down to, is the girl willing to marry someone with what may very will be a debilitating degenerative disease. In this aspect, it is not any different from any other disease that could not have been predicted.
By the way, Dor Yesharin only works as far as known mutations. In early testing days, fewer mutations were identified and tested for. These have been expanded, also to include mutations common to non-Ashkenazik populations (not as common as the ones in Ashkenazik populations). If theoretically, someone was to develop a sporadic germ-line mutation in the gene that is not known and not tested for, they could be found compatible with a regular Tay Sachs carrier, the couple could marry and have a child with Tay Sachs at 25% probability.October 4, 2018 1:22 pm at 1:22 pm #1598974
Winnie, you sound very knowledgeable about this predicament. Do you work in a field that’s related? Hopefully, none of your information comes because of personal experience. This has been quite a shocking experience, to say the least.October 4, 2018 2:49 pm at 2:49 pm #1599214
B”h no personal experience, but have some knowledge of genetics and a quick read of Tay Sachs websites filled in the missing blanks for me.
Your story brings up several interesting points that people might want to think about, I’m curious how people feel.
1. Had this boy’s parents been tested and their mutation carrier status identified, they presumably would not have married and this boy would not have been born. But he has lived 20 something healthy, productive years, presumably bringing his family nachas, doing mitzvos, learning Torah. Should all of that not have happened? Reminds me of Miriam’s protest on Amram’s divorcing Yocheved…
2. From what I read, LOTS is very variable- from mild symptoms to severe degeneration, both physical and mental, at different ages. This is similar to cystic fibrosis (also tested by Dor yeshurin)- there is a range of age of onset and disease severity. In some cases, it can be a disease that one can live with, although obviously it’s not at all pleasant. It is arguably different from the infant form of Tay Sachs that is always fatal at young ages. Yet, as far as testing and negating a potential shidduch, these are treated the same. Is that right?
3. Even with Dor Yeshurin, there is no way to guarantee a healthy spouse or healthy children. There are so many more diseases out there. Has the concept of genetic testing contributed to a feeling that we can control this, as suggested by the obvious hurt/pain expressed by AWOB when the testing of the dating couple failed to reveal a serious illness?October 4, 2018 3:30 pm at 3:30 pm #1599231
Point three can also be applied to wearing seat-belts in cars. Even with seat-belts, there is no guarantee that one won’t be injured.October 4, 2018 5:37 pm at 5:37 pm #1599272
Sorry but I don’t grasp what is being said here? Am I understanding properly that Dor Yeshurim can not test for LOTS?October 4, 2018 6:09 pm at 6:09 pm #1599283
Thank you, Winnie.
In other words, perhaps the parents were carriers, but in the child it won’t be picked up by tests because it needs to be developed before it’s picked up by tests…
If the genetics are the same, the test results should be the same.
Sorry but I don’t grasp what is being said here? Am I understanding properly that Dor Yeshurim can not test for LOTS?
According to how I understand Winnie’s very informative post, the test would show positive for Tay Sachs, but not specifically for Late Onset Tay Sachs.October 4, 2018 6:10 pm at 6:10 pm #1599291
Mammele, I believe he made a mistake when he wrote the boy wasn’t a carrier. His parents never tested.
Yes, the way I understand it, it wouldn’t make sense to say that he actually has Tay Sachs but isn’t a carrier.October 4, 2018 8:56 pm at 8:56 pm #1599321
To correct some mistaken assumptions that have been posted: Someone could have Late Onset Tay Sachs who is now in Shiduchim and his parents were tested by DY, since when the parents married as much as 35 – 40 years ago, they did not really know about LOTS, and they used a serum test, not DNA, to test for Tay Sachs when they first started DY. As long as there was more than 50% Hex A in the blood stream, they were presumed not to be carriers. Now, since they use DNA, they will flag a potential couple with LOTS mutations as well.
Also, only one parent has to have the LOTS mutation while the other can have the regular TS mutation and the child will have a 25% of getting LOTS. If both parents have the LOTS mutation (a statistically miniscule possibility, but it happens) the child has a 25% chance of having a very mild form of the condition.
It is also really important to point out that there are many variants of LOTS, even with the same mutation, and even in the same family. Some people with the condition are wheelchair bound by their 30’s or earlier, but others can be in their 50s before they are impacted in any significant way. It depends on the amount of Hex A in the system, and how efficiently the body uses it.October 4, 2018 9:06 pm at 9:06 pm #1599368
Maybe now with CRISPR gene-editing on the horizon, genetic diseases will become a thing of the past.October 4, 2018 11:03 pm at 11:03 pm #1599381
“Sorry but I don’t grasp what is being said here? Am I understanding properly that Dor Yeshurim can not test for LOTS?”
I think by now this question has been answered, but I want to add one more point- in the interest of maintaining privacy, and avoiding stigmas, Dor Yeshurin’s only goal is to see whether a couple is genetically incompatible- a go ahead means that the boy/girl do not both have mutations in the same gene. It does not address the status of each individual separately- therefore they would not inform this person that he is homozygous for the mutated HEXA, even if their tests can differentiate between 1 and 2 copies of a mutated gene, whether mutation is the same or not. That is the advantage of regular genetic testing where you are informed of your status, but that is not Dor Yeshurin’s goals and they have their reasons for not revealing the full genetic results.October 4, 2018 11:03 pm at 11:03 pm #1599382
“Point three can also be applied to wearing seat-belts in cars. Even with seat-belts, there is no guarantee that one won’t be injured. ”
You are right of course, but somehow when it comes to things that people don’t understand as well, emotion takes over logic.
And no one asks a potential shidduch suggestion if they regularly wear a seat belt, or whether their parents wear seat-belts, and no one is stigmatized for having not buckled up in the past, even though this could very well affect someone’s health/safety.October 4, 2018 11:35 pm at 11:35 pm #1599391
“Had this boy’s parents been tested and their mutation carrier status identified, they presumably would not have married and this boy would not have been born. But he has lived 20 something healthy, productive years, presumably bringing his family nachas, doing mitzvos, learning Torah. Should all of that not have happened?”
Excellent point that is not stressed often enough. The same principle applies to when a couple r”l divorces and some people unfortunately express regret over the fact that they ever married, not considering the beautiful Yiddishe children they brought into the world.October 5, 2018 7:43 am at 7:43 am #1599427
“Maybe now with CRISPR gene-editing on the horizon, genetic diseases will become a thing of the past. ”
Maybe…I still remember the excitement 25 years ago when viral-mediated gene therapy seemed to be the answer to genetic disease. They even had clinical trials for cystic fibrosis. Those were actually a disaster and had to be halted and the field of gene therapy has not been the same since.
CRIPSR is more efficient/better than other methods, but the same problem applies to all gene therapies- delivery to the right place, and targeting all the affected cells. Cystic fibrosis was a good disease to target because the CFTR gene needed to be delivered to the lungs, which are accessible by inhaling. The brain and nervous system are much harder to target. What is more realistic at this point in time is gene editing in the embryo following IVF. This of course opens a medical ethics mine-field of designing the perfect healthy baby….October 5, 2018 10:41 am at 10:41 am #1599480
All in all, from a shidduch perspective, it was too big of a gamble. Right now the person with the likelihood of getting LOTS has a sibling who is completely disabled from it, and other siblings who are B”H fine. The doctor’s letter provided to the other party in the shidduch does indicate that the odds are very small of this person developing further symptoms. But does someone risk caring for someone who will likely become a complete invalid at some point, even IF they may have 10+ relatively healthy years together? The LOTS person feels that they are already showing beginning symptoms. It would be very worthwhile for that person to be tested to confirm. Who knows, ultimately it is up to Hashem. Will have to put away the champagne (yes, it was that close to engagement when this was revealed) for now.
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