ALS in my Family

[twtytwo22]

my dad who was dianosed with ALS last year in august 08 and has since passed 6 months later on 2/11/09 .

Now on 2/14/2010 my oldest sister has been dianosed with having ALS . she had her final testing done in philly,pa and there confirmed what she has.

now my other sister ,myself and younger brother all worry if we now have this gene that we may get it or pass it to our kids. i have read a alot about testing and that you get tested and you might have a neg test result but might still have it.

my sister who has ALS has lost most of her voice and her limbs are about 15-20% affected already.

i know we have a 50% a chance of getting it.

 

[handinhand]

I feel so bad for you and your family. It must be terrible to live wondering if you might end up with this or that you might pass it on to a loved one. I know when i first found out about my desiease i worried about that so much. We are all here for you anytime. Hugs, Linda

 

[halfin]

I'm sorry to hear about this burden for you and your family. If possible I would suggest reviewing your insurance, and try to get some that would provide long term care and in home nursing.

As far as the testing, here is what you could do. First have your sister with ALS get tested and see if she has one of the genes known to cause ALS. The main test is for a gene called SOD1 but now there are a couple of other genes that can be tested for.

If she tests negative, then there is no way to know what gene it is and whether you have it. However, if she tests positive, then you know that gene is the one that is causing ALS in your family. You can then be tested and if you are negative, you won't get ALS and neither will your children. If you test positive, then unfortunately you are a carrier and would be at high risk to get ALS eventually. (Even then, it may hit at different ages and you might be quite old before it hits - maybe there will even be a cure by then.)

You may not want to put yourself and your family through this, and the tests can be quite expensive, several hundred dollars each. But it would be a possible way to get a better idea of what is ahead.

 

[twtytwo22]

I'm sorry to hear about this burden for you and your family. If possible I would suggest reviewing your insurance, and try to get some that would provide long term care and in home nursing.

As far as the testing, here is what you could do. First have your sister with ALS get tested and see if she has one of the genes known to cause ALS. The main test is for a gene called SOD1 but now there are a couple of other genes that can be tested for.

If she tests negative, then there is no way to know what gene it is and whether you have it. However, if she tests positive, then you know that gene is the one that is causing ALS in your family. You can then be tested and if you are negative, you won't get ALS and neither will your children. If you test positive, then unfortunately you are a carrier and would be at high risk to get ALS eventually. (Even then, it may hit at different ages and you might be quite old before it hits - maybe there will even be a cure by then.)

You may not want to put yourself and your family through this, and the tests can be quite expensive, several hundred dollars each. But it would be a possible way to get a better idea of what is ahead.

i know i have a great insurance plan and with my insurance i called and asked if the genetic test is covered and they said yes. so we are just trying to find a plan to get all tested.

my other sister and younger brother all have great jobs like me and have great insurance plans.

 

[pmbenb83]

I'm so sorry to hear about your dad and now your sister having ALS; so much for you and your family to go through.

Before you get tested, you might want to get the longterm insurance or life insurance, etc. implemented, because IF the test comes back that you do have the gene, you will probably be denied this insurance.

Best of luck to you and your family, especially your sister.

Take care.