If Only They Had Known ...
my parents wouldn't have dared to play genetic roulette35 total reviews
Comment from Begin Again
Sometimes the newest and latest technology can backfire on us and give us far more stress than we care to have. I am glad that your parents did not question nor have the ability - and that you have been the life you have - to share your writing abilities with us all. Smiles to you! Carol
reply by the author on 06-Apr-2021
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Sometimes the newest and latest technology can backfire on us and give us far more stress than we care to have. I am glad that your parents did not question nor have the ability - and that you have been the life you have - to share your writing abilities with us all. Smiles to you! Carol
Comment Written 04-Apr-2021
reply by the author on 06-Apr-2021
It was a week from hell waiting between the scary possibility and the good news from the second lab. I got through it by watching the comedy movie "This is Spinal Tap" around the clock! Thanks for stopping by. Cheers. LIZ
Comment from Anne Johnston
Thank you for sharing your story. I am sure that this was a very stressful time when you were going through this. And like you say, it was good your parents did not know they were carriers.
reply by the author on 06-Apr-2021
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Thank you for sharing your story. I am sure that this was a very stressful time when you were going through this. And like you say, it was good your parents did not know they were carriers.
Comment Written 04-Apr-2021
reply by the author on 06-Apr-2021
It was a week from hell waiting between the scary possibility and the good news from the second lab. I got through it by watching the comedy movie "This is Spinal Tap" around the clock! Thanks for stopping by. Cheers. LIZ
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You are welcome
Comment from karenina
What a nightmare. I cannot imagine the stress you were under! I'd have posed as a medical professional too if it meant getting results. Just goes to prove event he "best" medical centers can blow it...
More food for thought. As you point out, had your mother known she was a carrier, like so many faced with bringing a child into this world with a predetermined devastating disease that will in all likelihood take their life no later than age 5--you, nor your sister would have been born!
I've attended to both Tay Sachs babies and Huntington's Disease patients... Both are horrendous. Thank God everything turned out alright!
A special blessing to all those afflicted with or affected by either of these conditions.
I read an interesting article about Arlo Guthrie--whose father died of Huntington's Disease. Of course, he was offered and advised to be tested...
He chose NOT to be. He wanted (and continues to want) to live each day he is symptom free as a life renewing testament. I understand that...
What a touching post!
Karenina
reply by the author on 06-Apr-2021
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What a nightmare. I cannot imagine the stress you were under! I'd have posed as a medical professional too if it meant getting results. Just goes to prove event he "best" medical centers can blow it...
More food for thought. As you point out, had your mother known she was a carrier, like so many faced with bringing a child into this world with a predetermined devastating disease that will in all likelihood take their life no later than age 5--you, nor your sister would have been born!
I've attended to both Tay Sachs babies and Huntington's Disease patients... Both are horrendous. Thank God everything turned out alright!
A special blessing to all those afflicted with or affected by either of these conditions.
I read an interesting article about Arlo Guthrie--whose father died of Huntington's Disease. Of course, he was offered and advised to be tested...
He chose NOT to be. He wanted (and continues to want) to live each day he is symptom free as a life renewing testament. I understand that...
What a touching post!
Karenina
Comment Written 04-Apr-2021
reply by the author on 06-Apr-2021
Luckily Arlo won the 50/50 gamble--he didn't get HD--thus no risk to his kids. Woody had lots of kids--I think 3 had HD--most didn't.
It was a week from hell waiting between the scary possibility and the good news from the second lab. I got through it by watching the comedy movie "This is Spinal Tap" around the clock! Thanks for stopping by. Cheers. LIZ
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Lovely ssssssurprise!
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This was a great thought provoking post! Love thinking about medical ethics! (And their personal application)--Karenina
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Yup---It's such an individual decision. I watched one of the interviews where he was asked if he'd ever take the test...
He said he already knew, regardless of the results, that he (like all of us) were DEFINTELY going to die... So no, the WAY he was going to die is not something he wanted to live with.
That makes sense to me...(in the absence of any preventative treatment.)--Karenina
Comment from Mary Vigasin
Every so often there is a story that has me take a pause before I read it again and respond. I feel "speechless."
Waiting for that test must have been terrifying with the sword hanging over your head.
Luckily your parents and their doctor at the time never thought of the need to be tested.
Regards,
Mary
reply by the author on 06-Apr-2021
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Every so often there is a story that has me take a pause before I read it again and respond. I feel "speechless."
Waiting for that test must have been terrifying with the sword hanging over your head.
Luckily your parents and their doctor at the time never thought of the need to be tested.
Regards,
Mary
Comment Written 04-Apr-2021
reply by the author on 06-Apr-2021
It was a week from hell waiting between the scary possibility and the good news from the second lab. I got through it by watching the comedy movie "This is Spinal Tap" around the clock! Thanks for stopping by. Cheers. LIZ
Comment from Judy Lawless
Well let's try this again. I did a review, and then somehow deleted it.
This is a really interesting, and scary tale. It amazes me what knowledge I get from this website. I'm glad that your parents didn't know, and that you have been well.
reply by the author on 06-Apr-2021
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Well let's try this again. I did a review, and then somehow deleted it.
This is a really interesting, and scary tale. It amazes me what knowledge I get from this website. I'm glad that your parents didn't know, and that you have been well.
Comment Written 04-Apr-2021
reply by the author on 06-Apr-2021
It was a week from hell waiting between the scary possibility and the good news from the second lab. I got through it by watching the comedy movie "This is Spinal Tap" around the clock! Thanks for stopping by. Cheers. LIZ
Lovely ssssssurprise!
Comment from padumachitta
hey.
Well holy crap, you dodged that bullet. Huntington's is not something to be triffled with.
Geez, are you okay with it all? You wrote a story, but not with a lot of background emotions, and I wonder how it affected you.
Sorry, really none of my business. But this sounds like a horrendous time...
reply by the author on 06-Apr-2021
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hey.
Well holy crap, you dodged that bullet. Huntington's is not something to be triffled with.
Geez, are you okay with it all? You wrote a story, but not with a lot of background emotions, and I wonder how it affected you.
Sorry, really none of my business. But this sounds like a horrendous time...
Comment Written 04-Apr-2021
reply by the author on 06-Apr-2021
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I'm not at risk for HD--I meant that the lab tech likened TSD to HD--which freaked me out--in fact, the adult-onset form is NOT like HD--in any event, I don't have it--I'm just a carrier for TSD.
It was a week from hell waiting between the scary possibility and the good news from the second lab. I got through it by watching the comedy movie "This is Spinal Tap" around the clock! Thanks for stopping by. Cheers. LIZ
Comment from Leann DS
Knowing a bit about genetics because I have a genetic retinal disease, your story had me on my toes the whole way through. I want to know more! Huntington's disease is horrendous and frightening. We thought my dad had it just a couple years ago, but instead, he was diagnosed with an autoimmune disorder called chronic inflammatory demyelinating poly neuropathy, which has symptoms similar to Huntington's disease. Do you have the gene, are you going to get the symptoms? I'm so afraid for you. God bless you and I'll keep you in my prayers. Your sister as well.
reply by the author on 05-Apr-2021
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Knowing a bit about genetics because I have a genetic retinal disease, your story had me on my toes the whole way through. I want to know more! Huntington's disease is horrendous and frightening. We thought my dad had it just a couple years ago, but instead, he was diagnosed with an autoimmune disorder called chronic inflammatory demyelinating poly neuropathy, which has symptoms similar to Huntington's disease. Do you have the gene, are you going to get the symptoms? I'm so afraid for you. God bless you and I'll keep you in my prayers. Your sister as well.
Comment Written 04-Apr-2021
reply by the author on 05-Apr-2021
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Many thanks for the bonussssss!
No--I don't have HD nor does anyone in my family--I meant that the lab tech likened TSD to HD--which freaked me out--in fact, the adult-onset form is NOT like HD--in any event, I don't have it--I'm just a carrier for TSD.
Comment from Seshadri_Sreenivasan
OMG! What a nail-biting story. What kind of hell you must have gone through. In India majority of the people are unaware of these hereditary diseases. But they do believe in not marrying within the close family circles, a pearl of wisdom handed over to them by words of mouth. In the arranged marriages in India, the family from both sides check the family history before giving their consent. Thank you for sharing a traumatic past. May God bless you and give you the strength to cope with this in future.
reply by the author on 06-Apr-2021
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OMG! What a nail-biting story. What kind of hell you must have gone through. In India majority of the people are unaware of these hereditary diseases. But they do believe in not marrying within the close family circles, a pearl of wisdom handed over to them by words of mouth. In the arranged marriages in India, the family from both sides check the family history before giving their consent. Thank you for sharing a traumatic past. May God bless you and give you the strength to cope with this in future.
Comment Written 04-Apr-2021
reply by the author on 06-Apr-2021
It was a week from hell waiting between the scary possibility and the good news from the second lab. I got through it by watching the comedy movie "This is Spinal Tap" around the clock! Thanks for stopping by. Cheers. LIZ
Comment from RetroStarfish
Wow - what a terrifying tale! Well told, informative, chilling and true.
I like the way you look at life, and (even more so) the way you write about it.
reply by the author on 06-Apr-2021
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Wow - what a terrifying tale! Well told, informative, chilling and true.
I like the way you look at life, and (even more so) the way you write about it.
Comment Written 04-Apr-2021
reply by the author on 06-Apr-2021
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It was a week from hell waiting between the scary possibility and the good news from the second lab. I got through it by watching the comedy movie "This is Spinal Tap" around the clock! Thanks for stopping by. Cheers. LIZ
Lovely ssssssurprise!
Comment from BethShelby
This is so interesting, I can imagine the anxiety, you must have had awaiting the results of testing. I hope for you the danger of Huntington's disease has passed. Maybe the fact Jewish mothers want their children to marry with their own etheric culture isn't such a just a good idea.
The odds of any one of us ever being born seems to be astronomical because even parents who aren't carriers of genetically challenged genes have babies, but think of all the variations of eggs and sperm that go to make us who we are. Our parents would have children, but the specific makeup that results in making us who we are would occur only once in a lifetime. The fact that we exist at all makes me believe that we much be here for a reason. I know I went off on a tangent. My mind works like that sometimes.
reply by the author on 06-Apr-2021
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This is so interesting, I can imagine the anxiety, you must have had awaiting the results of testing. I hope for you the danger of Huntington's disease has passed. Maybe the fact Jewish mothers want their children to marry with their own etheric culture isn't such a just a good idea.
The odds of any one of us ever being born seems to be astronomical because even parents who aren't carriers of genetically challenged genes have babies, but think of all the variations of eggs and sperm that go to make us who we are. Our parents would have children, but the specific makeup that results in making us who we are would occur only once in a lifetime. The fact that we exist at all makes me believe that we much be here for a reason. I know I went off on a tangent. My mind works like that sometimes.
Comment Written 04-Apr-2021
reply by the author on 06-Apr-2021
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I'm not at risk for HD--I meant that the lab tech likened TSD to HD--which freaked me out--in fact, the adult-onset form is NOT like HD--in any event, I don't have it--I'm just a carrier for TSD.
It was a week from hell waiting between the scary possibility and the good news from the second lab. I got through it by watching the comedy movie "This is Spinal Tap" around the clock! Thanks for stopping by. Cheers. LIZ
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Delightful ssssssurprise!