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Sep 4, 2015

Counsyl Survey


With fall rapidly approaching, we are one season closer to starting the whole IVF process.
To be honest, although visions of my future with tiny babes and a beautiful nursery would make me smile from time to time during the summer, those thoughts faded to the background as we soaked up every last second of the chaos that comes with warm weather.

Until this week, when I received a request to complete a survey from Counsyl.
A quick background, Counsyl is the company that provides DNA screening for people looking to conceive, or just want a better understanding of their genetic make-up.
Our RE suggested  that since we are going through the whole process of making a baby the non-traditional way, it wouldn't hurt to have this information in our back pocket.
And boy are we glad we did.

As you can see above, that is a screen shot of our results.
Mark was tested first.
When he was a carrier of MCAD, it was necessary for me to be tested.
We were a match.
Our chances of both being carriers are 2 in 289,000,000.

Two in Two Hundred Eighty Nine....MILLION.

To put this in perspective as to how unworldly our odds are of being a match, there are about 318 million people in the United States. If you eliminate the people in California (sorry California) to the tune of their 38 million people, and lined up everyone else, Mark and I would have to find each other in that mass of people.

That's how crazy this whole situation is!

So getting back to the survey. I got an email asking me to respond to some questions due to our situation.
And since I am not one to turn down the opportunity to speak up about this subject, I gladly obliged.

See, I can't stress enough how important these DNA test are.
Taking a simple blood test for you and your partner could nearly eliminate the unknown about genetic disorders. Outside of mutations like Down's syndrome, the idea that we could squash the big hitters like Cystic Fibrosis and Tay-Sachs is amazing.

These tests are no more than $100 per person. And could be less (or free!) depending on your medical insurance. To think that for $200 we could live the rest of our life knowing our future kids are mutation free is a price we were willing to pay for our sanity.

Obviously, being a match for a mutation opens up a whole other slew of doors that most people don't expect. And the ideal way to move forward with the lowest risk of mutation is IVF with PGD.

Granted, each state has their own mandate regarding IVF coverage, and at this current time, most states have none, but the times, they are a'changin'.
Yes, this is a potential costly affair, but in my mind, it is worth that cost for a lifetime of less worry, pre-mature death, a lifetime in a hospital, round the clock care...and the list goes on.
Children by themselves are enough to worry about.
Sick children double or triple that stress.

For Illinois, where I reside, we have made major changes in our womens' medical coverage.
Starting with Obamacare, we can choose our own individual plan that ensures we have the proper coverage we demand.
Then we passed a mandate outlining standard coverage for IVF.
It currently does not include freezing/thawing of embryos, or medication costs, but again, medical coverage reduces these as needed.
And in March of 2015, Blue Cross announced they would be covering PGD if medically necessary.

I am just thrilled to have these types of opportunities.
I can't stress enough how important it is to be an advocate for your own health.
Do your research.
Educate yourself as much as possible.
Know your options.

Because when these hurdles cross your path, no one wants to hear you sob about how the odds are stacked against you.
What they want to see is a warrior.
A fighter.
Someone that WILL NOT back down with a set-back.

So I took that survey. Because if it helps promote or communicate the need for these types of DNA tests to eliminate sickly children in this world, then I will do my part. No questions asked.

I hope there are other people out there considering these alternatives.
You wouldn't bat an eye at getting STD test, right?
So why wouldn't you consider knowing if you are a carrier of a mutation.
I should mention that BOTH people have to be carriers for pass on a mutation.
If one person is, and the other isn't, you are in the clear.
MOST people are carriers of something.

So get tested. For your future family. For yourself. For your sanity.
And then get to doing the nasty if you aren't a match. You are going have beautifully healthy children!

2 comments:

  1. I'm a carrier of Cystic Fibrosis and Joe carries nothing, we had the testing done through Counsyl as well. Do you know if PGS testing is covered by BCBS now too or is it just PDG?

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  2. As long as a road this has been for you, you've learned an insane amount of information which is amazing. Basically through all of this you KNOW your baby will be healthy which is a wonderful peace of mind…..

    I remember waiting for those 'major' appointments literally being clueless with what was inside of me. Downs, cystic fibrosis, it all scared the crap out of me. As exciting as the appointments were, all I wanted to have was that peace of mind that the bebe was ok.

    Granted, things can still go down, but it's so wonderful you can weed through all the genetic crap. And seriously, that is INSANE the odds with the two of you being carriers. Blows my mind!

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