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September 17, 2014 / 22 Elul, 5774
At a Glance

Posts Tagged ‘Dor Yeshorim’

The Children Of The Chronically Ill And Their Battle For Shidduchim

Wednesday, May 27th, 2009

Dear Ms. Novick,

 

I would like to thank you for your thoughtful column. The information you provide has helped me through the ups and downs of living with a spouse who had MS.

 

There is one issue I have not seen addressed – shidduchim of children whose parent has a chronic illness. My beautiful, intelligent daughter has been unable to get a date because, “your dad has MS.” I guess people take that to mean, “Your home is depressing.”

 

Do you know anyone or any resource to help our children? I am at wits end. Any suggestions would be greatly appreciated.


A Well Spouse


 


 


 


Dear Well Spouse,

 

This is an extremely important issue and I thank you for suggesting it. I am glad my articles have been helpful to you.  I hope, with Hashem’s help, I can assist you in this matter as well.

 

You seemed to have raised two issues here. The first is the supposed detriment of dating and, potentially marrying, a person who has an ill parent. The second is the depression that is assumed to accompany the situation.

 

For many people, dealing with illness is something they will go to any lengths to avoid. And so, if a parent is ill, whether that illness may have a possible genetic correlation or not, is reason enough for some parents and shadchanim to negate a potential match. Yet if we look around us, we all know couples who are suffering from terrible illnesses with no family history of the disease. We also all know many people who have a disability or chronic illness whose children and grandchildren have no such problem.  “But why take a chance. There are more fish in the sea,” is the response I have heard from many parents who refuse to hear a shidduch with a family who is coping with illness.

 

            Using a microscope to examine the history of a potential spouse has become the norm. Parents of “perfect children” want only “perfect matches” for their children. But which of us truly have flawless children, and how many children really grow in homes where they have never experienced problems?  And is a child who has never had to deal with adversity better prepared for the world a young couple must face than one who has? Have the concepts of bashert and bitachon been totally thrown to the wayside when it comes to marrying off our children?

 

We all wish for our children joyous, anguish-free lives.  But is that really even possible? No one goes through life without facing difficulties – some illness, disagreement or hardships. It is the people who can handle difficulty, who aren’t scared off at the first sign of a problem that handle adversity more easily and efficiently and get their family through it relatively unscathed. And those are often the people with experience. They are often the children of a parent with chronic illness. 

 

We already do genetic testing for Tay-Sachs disease and, I believe nine or 10 other genetic diseases, through Dor Yeshorim. Perhaps it would be a good idea to extend this, if possible, to other diseases that have a known or suspected genetic component upon the request of families dealing with these illnesses. This might give those children of the chronically ill a better chance at dating, and not be eliminated because of what might be in their genes. Further, it will help us remember that not all illnesses have a genetic base.

 

Living in a home with illness can certainly lead to depression. But to assume it does in all cases is ridiculous. Today, depression can be handled successfully in many ways and does not have to be a lifestyle. When other methods fail, antidepressants can help us cope with life’s difficulties.  While I am not advocating their indiscriminate use, they have their place when needed, as does all medication that alleviates symptoms. If there is long term or short term depression in your home resulting from living with illness for many years, medication is definitely something to discuss with your doctor. If your home is depression-free, make sure to ask the references you give to shadchanim to mention that your home is a comfortable, happy place in order to offset the assumption that it is the opposite, even before the question is asked.  This is especially important when people are assuming that depression exists wherever there is chronic illness and may not even ask for verification for what they assume is true.

 

I would be grateful to hear from my readers about their thoughts and/or experiences when it comes to dating a person with an ill parent. My suspicion is that those who have married children of the chronically ill have a lot to teach us and share with shadchanim. I would also like to hear from shadchanim and get their point of view on setting up children like the daughter of the letter writer. 

 

Any shadchan or person wanting to contact the writer of the letter concerning her daughter can do so through me. I will happily forward your ideas.


 


You can reach me at annnovick@hotmail.com

Chronicles Of Crises In Our Communities – 3/09/07

Wednesday, March 7th, 2007

We encourage women and men of all ages to send in their personal stories by e-mail to rachel@jewishpress.com or by mail to Rachel/Chronicles, c/o The Jewish Press, 338 Third Ave., Brooklyn, N.Y. 11215.

To all women, men or children who feel that they are at the end of their ropes, please consider joining a support group, or forming one.

Anyone wishing to make a contribution to help agunot, please send your tax-deductible contribution to The Jewish Press Foundation.

Checks must be clearly specified to help agunot. Please make sure to include that information if that is the purpose of your contribution, because this is just one of the many worthwhile causes helped by this foundation.

* * * * * *

Dor Yeshorim – Re: ‘Should Have, Could Have, Yet Didn’t’
And Reader Response (Chronicles 12-22; 1-5)

Dear Readers:

This is written in response to the heartfelt letter written by an anguished young woman, “Should Have, Could Have, Yet Didn’t” and to those who reacted emphatically with their own feedback.

1. To “Should Have, Could Have, Yet Didn’t:” It pained me to read of your heartbreaking experience, since the very mission of Dor Yeshorim is the prevention of genetic diseases without causing damage or harm, including the kind of psychological anguish you are suffering now.

The following remarks are intended for the individual who recognizes and understands the potential for negative psychological outcome of carrier status knowledge and wishes to use the Dor Yeshorim program in the way in which it was intended. This is not an attempt to convince those who stubbornly cling to ideas stemming from denial of life’s realities. Nevertheless, due to the potential for great damage to Klal Yisrael through the letters of misguided individuals, I am compelled to respond as follows:

2. In Letter #1, the writer asks: “What is wrong with knowing whether and which of one’s own children is a carrier of a disease?” Later, the writer admits that his/her children were tested privately and “as it turned out,” were not carriers of any of the diseases tested by Dor Yeshorim.

I respectfully suggest to the writer: First, are you absolutely sure that all diseases on the DY panel were tested? Second, please take a few quiet moments to reflect and be honest with yourself – would you feel the same way if one or more of your children did turn out to be a carrier for one or more fatal disease? If, after honest reflection, you believe your opinion to be the same, you are of a small minority.

The majority of individuals, regardless of their level of intellect and education, have great difficulty using intellect to dominate emotion. Although most educated people are cognitively aware that being a carrier of a recessive genetic disease is of no health consequence by itself, experience has shown (and been verified in medical journals time and time again) that even highly respected medical professionals have difficulty integrating the knowledge of positive carrier status. This is human nature, especially at a time when one is involved in the pursuit of a marriage partner.

Dor Yeshorim is acutely aware of and sensitive to this and was created expressly for the purpose of protecting individuals from their own potential lifelong negative psychological experiences that would result from knowing one’s own carrier status.

As a case in point, “Could Have, Should Have, Yet Didn’t” procrastinated in finding out compatibility status, a task which − if done early on − would have amounted to nothing more than “on-with-the-next-prospective-match.” But a small part of her may have been emotionally unprepared for the possibility of a negative answer and thus the delay in checking compatibility.

Had she in fact known she was a carrier through private testing, this knowledge would have been of no benefit to her at all, and she would have been propelled to delay even more! Human nature dictates that individuals prone to avoiding tasks that have the potential of causing even the slightest pain willsurely procrastinate should there be a definite possibility for pain.

Additionally, current statistics bear out that one in two couples will have a carrier among them, as one in four individuals is a carrier for a recessive genetic disease. That amounts to a lot of carriers, all of whom are deserving of protection from stigma and the dignified way in which DY tests and provides access to genetic information.

3. In the same letter, the writer states: “With private, informed testing, someone who turns out to be a carrier will know that checking the D.Y. numbers early on or before a first date is an absolute must.” I should hope the writer meant this to refer to his/her future potential marriage partner who is unaware of his/her carrier status. For anyone who has taken a Dor Yeshorim test knows that he or she has signed a statement of awareness that a DY test can only be taken by individuals who have no knowledge of their carrier status.

Dor Yeshorim is intended for individuals who want to be protected from knowledge of their carrier status, not those who already know they are carriers and want to then be served by Dor Yeshorim. This practice would be in direct violation of the principles upon which Dor Yeshorim was founded, and anyone found to engage in such practice would be automatically disqualified from receiving any further DY service. Such practice is deemed gezailah, as provided by the written psak of our gedolim.

Additionally, would this practice be the norm, Dor Yeshorim would become a “carrier” organization and its purpose obsolete, creating a situation of polarization within the Jewish community of “carriers” and “non-carriers” − thus causing all carriers social and psychological stigma and defeating the very purpose of DY’s existence.

4. In Letter #2, the writer states: “Dor Yeshorim informed me that a match was not compatible. We dropped the shidduch and subsequently learned that the Dor Yeshorim findings were not necessarily conclusive Dor Yeshorim does not have the facilities for further testing and therefore takes the conservative approach of declaring the couple to be incompatible. In our case, after consulting with a doctor and extensive testing by an expert recommended by Dor Yeshorim, it was determined that the ‘probable’ positive was definitely negative.”

The facts as stated are misrepresented and sadly misleading and not worthy of argument. Suffice it to say that the letter serves only to confuse others and was a self-serving way to use a newspaper for the purpose of airing disappointment at the expense of others.

5. In Letter #3, the writer states that “Should Have” might have fixed the problem by being referred to the PUAH Institute, as “carrier couples of serious genetic diseases have several medical and halachic options open to them, including in IVF with pre-implantation diagnosis – a procedure that is utilized by many Orthodox couples who cannot conceive naturally.” Although I agree that once already in a situation of commitment to a relationship, other halachically viable options can be explored for reproduction so that the couple can get married and “Should Have” can certainly discuss this with her rav, the Dor Yeshorim program was not designed to be utilized by couples who are already committed to one another.

The point of the DY program is prevention (of multiple issues) and to avoid confronting exactly this type of challenging situation − a couple discovering they are genetically incompatible after having formed an emotional bond! This too is in violation of the Dor Yeshorim program. (Every individual agrees and attests by signature of his/her awareness that testing and checking for compatibility is available only to those who are not yet committed to a relationship. While we would like to be able to help every person in Klal Yisrael, our resources remain limited to the extent that we are unable to immerse ourselves in the lives of participants and their potential incompatibility following emotional attachment.

Furthermore, PUAH is there to help couples unable to conceive. It is a last resort, not a first prerogative! Entering into a marriage knowing one will have to use such methods is a complicated matter, to say the least. These are not meant to be a lifestyle choice − but may become one if people are not vigilant about checking for compatibility early on in a courtship.

In summary: Due to the fact that most couples are genetically compatible and thousands of tragedies have Baruch Hashem been averted, the severity of the potential for the catastrophe of giving birth to genetically diseased babies has left the consciousness of most people. It is simply not a high priority issue among most dating couples. We have all but forgotten what lurks within our genes, ever threatening to rear its ugly head and wreak havoc in our lives and the lives of our future generations!

But as the father of four children who died slow, agonizing deaths due to Tay-Sachs disease, I urge every reader to take the precaution of testing and checking for compatibility before emotional attachment develops in a relationship. Don’t wait until you are poised for engagement! Unfortunately, many couples that approach Dor Yeshorim with inquiries about compatibility are under the misguided belief that compatibility checks are the last step before engagement. And these couples may subsequently suffer serious consequences.

The use of the DY program as it was intended works simply and smoothly – don’t let inertia or fear allow you to procrastinate until the last moment!

Kol Tuv.

Rabbi Josef Ekstein

Founder, Executive Director, Dor Yeshorim

Chronicles Of Crises In Our Communities – 1/05/07

Wednesday, January 3rd, 2007

Readers advise “Should have, could have, yet didn’t…” (Chronicles 12-22)

Letter #1

Dear Rachel,

My heart broke for the “older single” who finally met a young man she might get engaged to and it turned out their Dor Yeshorim numbers didn’t “match.” Part of the tragedy is the writer’s implication that she should have known better.

Rather than debate the obvious − of when exactly to check D.Y. numbers, how about breaking out of the prevalent double-blind mentality? What is wrong with knowing whether and which of one’s own children is a carrier of a disease? Several of my children were tested independently by a frum doctor for the same diseases as those on the D.Y. list. Our health insurance paid for the tests, and my children − who, as it turns out, are not carriers of any of these diseases − have been able to date confidently.

When one of my children was about to get engaged and her future in-laws asked for the D.Y. numbers to be “matched,” we knew there was nothing to worry about. With private, informed testing, someone who turns out to be a carrier will know that checking the D.Y. numbers early on or before a first date is an absolute must.

Letter #2

I had a similar situation, where Dor Yeshorim informed me that a match was not compatible. We dropped the shidduch and subsequently learned that the Dor Yeshorim findings were not necessarily conclusive. In our specific situation, one party was definitely positive, but the other party was “probably” positive.

Dor Yeshorim does not have the facilities for further testing and therefore takes the conservative approach of declaring the couple to be incompatible. This may not be true in all cases. In our case, after consulting with a doctor and extensive testing by an expert recommended by Dor Yeshorim, it was determined that the “probable” positive was definitely negative. We went ahead with the shidduch.

Letter #3

You could have referred “Should Have” to the PUAH Institute. Carrier couples of serious genetic diseases have several medical and halachic options open to them, including in IVF with pre-implantation diagnosis − a procedure that is utilized by many Orthodox couples who cannot conceive naturally.

For two people who have had such difficulty finding emotionally compatible spouses, every attempt should be made to help them find happiness together and to build a bayis ne’eman. Your dismissal of their courtship as simply being “not bashert” is cruel and potentially condemns these two people to a lifetime without companionship or children.

Letter #4

THEY CAN GET MARRIED. My cousin who is a world genetic specialist told me that there are possibilities, and the shidduch does not have to be called off. There are ways they can have children, albeit irregular − but if they are committed, then they can, by all means, have kids. I hope you can relay this message to the girl.

Thank you for bringing this and all the issues to the fore. You are a guiding light in our fractured community.

Dear Readers,

Your responses were overwhelming. Mi ke’amcha Yisrael? − Who is like Your people?

I thank all of you who cared enough to take the time and trouble to express your genuine concern and advice. While the final determination is ultimately up to the affected parties, your input will hopefully offer them and others a springboard for a positive resolution.

Chronicles Of Crisis In Our Communities – 12/22/06

Wednesday, December 20th, 2006

We encourage women and men of all ages to send in their personal stories by e-mail to rachel@jewishpress.com or by mail to Rachel/Chronicles, c/o The Jewish Press, 338 Third Ave., Brooklyn, N.Y. 11215.

To all women, men or children who feel that they are at the end of their ropes, please consider joining a support group, or forming one.

Anyone wishing to make a contribution to help agunot, please send your tax deductible contribution to The Jewish Press Foundation.

Checks must be clearly specified to help agunot. Please make sure to include that information if that is the purpose of your contribution, because this is just one of the many worthwhile causes helped by this foundation.

* * * * * * * * * * *

Dear Rachel,

Being an older single girl in a very marriage-oriented society is not easy. Spending many long fruitless years dating isn’t easy either. I went from one heartbreaking saga to the next − each time getting a little more discouraged. My friends were married, having children and moving on in their lives. And me? I was still dating.

And then a friend set me up. From the first date it was different. I didn’t say anything in the beginning, but something inside of me knew that this just might be it. Every successive date made me surer. I began to confide in people that my search may have come to an end. In my heart I knew.

We have so much in common: goals, dreams, aspirations, and we both spent many difficult years dating. Less than six hours ago the phone rang. It was Dor Yeshorim. We have one more thing in common − we are both carriers for a serious genetic disease. There would be a one in four chance for each of our children to have this debilitating illness. The shock was immense − never in my wildest dreams would I have imagined such a scenario.

With the pain still fresh in my heart and the tears still wet on my face, I turn my pain into a message to the Jewish community. With the ability to genetically test, G-d has given us the means by which to avoid so much suffering. When G-d chooses to send suffering, then we accept it with love − but when man chooses it?

How different my story would be had we tested before the first date. But who does that? After the time spent checking every aspect of the boy/girl, who can be bothered to spend the five minutes to confirm the match with Dor Yeshorim? Better to save the five minutes − and wait until the couple is emotionally involved??

Why isn’t it accepted in our community to test before every boy and girl meet? Everyone believes that these stories happen only to others. Just like I did. Until less than six hours ago − when it hit home. And nothing I have gone through in my life has prepared me for this anguish.

I do not have a monopoly on pain and suffering. There are so many different types of agony, each worse then the next. But there is extra pain in knowing how easily this could have been avoided.

And what will it take to change the policy? This is a situation that so many before me have faced, so many after me will face − and everyone has the chance to avoid. It is too late for me now − but it may not be too late for you.

“May it not befall you − all who pass by this road. Behold and see, if there is any pain like my pain which befell me” (Eichah 1:12).

Should have, could have, yet didn’t

Dear Didn’t,

My heart goes out to you and your families. You have suffered a terrible letdown. We don’t often hear of this sorrowful disillusionment because of the low percentage rate in receiving such negative news and due to the fact that most people check in with Dor Yeshorim (genetic screening program) early on in the process.

Take, for example, the Chassidic members of our communities. Boy and girl have their first encounter. If a second “meeting” is in the offing, Dor Yeshorim is promptly consulted. At this early stage, discomfort at hearing “bad news” is minimal.

You don’t say for how long a time you were seeing your suitor, but anyone who tachlis dates is well advised to check with the genetic testing lab once there is a mutual indication of interest in pursuing a relationship. Of course one has the option to call Dor Yeshorim before ever connecting with a potential shidduch candidate, but the practical and safe solution is to do so before embarking on a second or third date.

Faith and belief in the ways of Hashem will sustain you and ease the ache in your heart – you must trust that this was simply not a match made in Heaven. May He wipe your tears away and lead you to your true match and happiness forever after.

Thank you on behalf of our readers for sharing your painful ordeal. Many are sure to gain benefit from their exposure to your traumatic episode.

Printed from: http://www.jewishpress.com/sections/family/chronicles-of-crises/chronicles-of-crisis-in-our-communities/2006/12/20/

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