Genetic Testing

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Genetic Testing

Postby danamruff_socal » Thu Dec 13, 2012 12:51 am

Hey everyone!!

Just looking for some insight on genetic testing. I don't know much about it other than what I have found on the Angioma Alliance home page. It's something that interests me being a young female adult. I'd like to know if my form of CA will be hereditary or not. Anyways, I did a little research via Google a couple nights ago but didn't yield much information.

Just curious what it typically costs and if insurance generally covers that cost or not. Also, is it just a simple blood draw analysis or is there more to it?

Thanks everyone!
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Re: Genetic Testing

Postby Connie Lee » Thu Dec 13, 2012 3:54 am

Hi Dana,

Insurance coverage varies from company to company. If you have multiple lesions, you are far more likely to get the testing covered. It is a simple blood test. You can do it through a family doctor or a specialist - there are links on our site to two of the labs that do the testing and there are now a couple more that we don't have on the site yet. If you were to pay out of pocket, the cost depends on what is found. It can range anywhere from $190 to almost $2000. They start testing with CCM1 and go all the way through CCM3 until they either find something or find nothing. If they find a mutation on CCM1 it costs less than having to go all the way through 3 genes. Just so you know - if you only have one lesion and no family history and particularly if you have a venous angioma along with the cavernous angioma, the chances of it being hereditary are very slim.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Re: Genetic Testing

Postby Brittany » Thu Jan 16, 2014 4:31 pm

I am a your female of 24 years old with a brain stem canvernoma, do you know if I was to have child is they would inherit this?
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Re: Genetic Testing

Postby Cassie8212 » Thu Jan 16, 2014 9:55 pm

Do you have more than one cavernoma?? You should ask if pregnancy is safe for brainstemers.


I had the most symptoms when pregnant.
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Re: Genetic Testing

Postby Brittany » Fri Jan 17, 2014 9:57 pm

I have one on my brain stem, i plan to have children but i dont want to pass this on to them, ive had two bleeds, effecting my vision, what kinda of symptoms did you have, would you suggest having children?, I really want to have kids but i dont want them to go through all this
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Re: Genetic Testing

Postby Cassie8212 » Sat Jan 18, 2014 10:09 pm

I would get the genetic testing done to rule out if you can pass it on. I have the genetic firm and had two kids before I knew. I wish I had known because it is awful worrying that they may have this.
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Re: Genetic Testing

Postby vandy » Tue Jan 21, 2014 1:57 pm

Hi Cassie,

I echo Connie here. If you only have the one and there is no evidence of family members having been diagnosed, I would think you have the sporadic form. Testing is expensive and what would you do with the results? It would have serious implications for yourself as you would have to indicate having a pre-existing condition when taking out insurances etc. Think about it carefully and after you discuss this with your Dr.'s and only when they recommend that you do the testing, you can always decide then.

Best wishes,

Henk :ugeek:
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Re: Genetic Testing

Postby Michelle2000 » Fri Jan 24, 2014 3:50 pm

Genetic testing is a personal decision that isn't easily arrived at. It took us 3 years to decide to have our son tested when we already knew he had the genetic form because of multiples and a grandmother with multiples (we had no idea that hers were hereditary until our son was dx- the doctors never mentioned that to her). At that point I realized he already had the preexisting condition (and ACA had been passed) and it was better to know which form in order to participate in any research studies he might want to be a part of. It took me a long time to get to that point, and our other children have not been tested.

Best wishes as you sort this out.

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
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