To those with FALS:

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L919

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Apr 26, 2013
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NY
I am trying to get some perspective from people who've been here before: I am positive I want children at some point, but I know that ALS is strongly genetic on my father's side. I'm worried that I'll pass it down, and sometimes I worry about leaving the family I created some day.
How did you decide to have/not have biological children? What were some things you considered?
 

Cricket

Distinguished member
Joined
Feb 10, 2013
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166
Reason
PALS
Diagnosis
07/2011
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CA
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ON
I would ask myself two questions:
Am I the kind of person takes what life has giving me, to do my best and enjoy living?
or*
Am I the kind of person who worries about "what if" all the time and lives in fear and guilt?

All I can say is tht life doesn't always turn out like we had planned anyways

Wishing you the best and good luck
 

Nikki J

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Mar 22, 2012
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7,250
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PALS
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04/2014
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US
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Hi I am from a FALS family but we did not know it when deciding about children. I think there will be a cu re for most forms of FALS by the time unborn children would have to face it but maybe I am an optimist. Do you know your gene? If you do or can find out I would consider trying to get into the UMiami FALS study. They will test you if there is an identified family gene and tell you your results and it is protected information with regards to future insurance. If you don't know the gene and having living afflicted family members they will test that person and then if they find a gene they would test you. If you want children and ALS is stopping you at least consider finding out whether it is truly an issue
Good luck
 

Nighthawk

Senior member
Joined
Jan 17, 2013
Messages
831
Reason
PALS
Diagnosis
12/2011
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US
State
Maryland
@L919,

We, as human beings cannot foresee the future and what it holds for us.
In life, there is always a 50/50 about things.
As Nikki says, who knows by the time an unborn child today may have to face this disease in the future (it generally affects people between 50-70 y.o.) there might already be a cure.
But, in the end, the decision of whether or not to have kids lies on yourself.


NH
 

Barbie

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Dec 29, 2007
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2,659
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Lost a loved one
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01/2007
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US
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FL
Hey--I have a different perspective than the others here--I am only speaking for my own feelings, but if I was a Fals, I would not have my own children. you can "have " children and not give birth--you could adopt or you could use a surrogate with your husband's sperm. I just know that ALS is too terrible to possibly pass on genetically.

Sorry, but that is how I feel.

B
 

cocacolafun

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Joined
Jul 7, 2012
Messages
13
Reason
Loved one DX
Country
CA
State
Ontario
Am I wrong or your children could die from hundreds if not thousands of other reasons before they attain an age of 60+?

As for myself, I know life can be hard, car accidents happens, disease can hit, air plane can crash, etc .... and I decided to have 5 children.

I might be neglecting some ALS fact when doing my statement. But for me, a life without my 5 children isnt a life.
 

L919

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Apr 26, 2013
Messages
7
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Loved one DX
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US
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NY
Thank you all so much for sharing your perspective. I understand it is my choice alone, but it helps to hear some others' thoughts!

The SOD1 gene runs in my family, and I am considering starting myself in the UMiami research after college. However, I have decided that I don't want to know if I am a carrier or not. As Nighthawk said, there's a 50/50 chance I might or might not be, and even if I am a carrier I might not show symptoms for a long time if at all (we have an elderly cousin who we believe is a carrier but at 93 y.o. hasn't shown any sign of it). I frequently remind myself that I know that my children would have a good life, and that ALS could not even be the worst thing to happen.

I do hear where Barbie is coming from, and adoption would be my alternative, however it would take almost convincing on my husband's part; I'll have to discuss further with him at some point.
 

Nikki J

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Joined
Mar 22, 2012
Messages
7,250
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
There is exciting research on sod1. They recently reported on a phase 1 trial of antisense technology for sod1. It passed for safety and although I do not think they looked at efficacy I think from what I have heard it looks promising.
I hope your dad will look at being in a phase 2 trial when it becomes available.
I totally get the not wanting to know. At your age I would only consider testing trough a study like Miami. You are only protected for health insurance eligibility if you have a positive gene test commercially. You would ave trouble with life disability long term care policies. I chose to know (and I am positive for c9 orf72) and for me after the shock more off it was the right choice.
I truly think antisense technology may be the answer for both sod1 and c9orf72 and sod1 research is 3 or 4 years ahead in that field.
Good luck. I am participating in Miami if you have questions about it. There is also a FALS support group on Facebook if you are interested
 

L919

New member
Joined
Apr 26, 2013
Messages
7
Reason
Loved one DX
Country
US
State
NY
Wow, Nikki J, I've never heard of antisense...it does look promising though! That's quite hopeful.
My major 2 questions about Miami are: How does travel to Miami work (I'm in upstate NY)? And what does being involved entail?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
7,250
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
Miami study to qualify at least 2 ALS relatives and either documentation of family gene or living afflicted member who will give blood for testing
First they do phone interview and family tree and then ask you some screening questions to see if already have als symptoms or if you are very unstable emotionally. Assuming no to both they ask if you are willing to send a sample of blood (I did not do that as I already was tested I sent my lab report). I know from other studies you have your blood done locally they will send you what you need no cost to you. If you are going to know your results you talk to a genetic counselor before and get the results from the counselor again over the phone ( they ask you have someone with you). If you choose not to know I suspect you skip the counselor but not sure. If you choose to know and are positive you go to Miami if you do not want to know they may invite you to Miami but there are fewer spaces for the unknown group so it is not always available so I was told

If you go to Miami it is 2 days of testing and they fly you in the night before and you leave after the second day tests. They pay your plane fare you hotel and will reimburse you up to a certain amount for meals. It is very intense testing. Long interview on environmental factors blood work neuro exams neuro psych testing MRI emgs spinal tap bone scan and muscle biopsies

You can do the first part and opt out of the second part. There was a 16 week waiting list last year not sure if they have caught up

And yes antisense is very exciting
 

L919

New member
Joined
Apr 26, 2013
Messages
7
Reason
Loved one DX
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US
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NY
Also, cocacolafun, I understand your point of view, and my response is this: Yes any of those things could happen and they're totally out of our control. However, passing on the ALS gene is likely completely within my control! Is it worth it when there are so many other options?
 
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