Genetics – or as learned today..fitting into your genes.

Today I attended a speaker event at a local jewish synagogue.  It featured speakers discussing different types of genetic disorders linked to Ashkenazi Jewish ancestry.  I attended because women from the organization I am in FORCE (Facing our risk of cancer empowered) were speaking and had a table at the event.  I had no idea what I was embarking on by attending this kind of event.  The majority of it was geared towards the staggering amount of illnesses (19 to be exact) that can be carried by people of Ashkenazi decent to their children.  19, Did you hear me, 19!!!!  I knew when I was pregnant with my children that I would have to be tested for some well know ones, such as Tay Sachs and Cystic Fibrosis, but who knows if I was tested for all 19.  And this list is awful in terms of lifespans, the type of sickness, therapies, all of it.  As if that wasn’t enough the last couple speakers spoke about BRCA1 and BRCA2 and all the links that they have to not just breast cancer and ovarian cancer but some other cancers as well, such as prostate, pancreatic, etc.  As a Jewish woman of Ashkenazi decent (meaning the majority of my blood lines are from Eastern Europe) what do you say to that, what do you think, what do you feel.

Awful and relief at the same time if that’s possible.  Fortunately my children did not present with any of the 19 illness discussed today or they will not as far as I know but that doesn’t make me feel any better because I do know that one of them could possibly be positive for the BRCA1 187del ag mutation that I carry.  When they are around 25 it will be up to them to decide if they want to test or just have surveillance.  For testing of this nature is an individual thing.  I have always wanted to know all the facts but one of my children might not  be that way and I have to support them in whatever they decide when the time comes.  The other reason I felt so much pain after attending this event today was to hear the stories of those with children or people who are carriers of these illness.  One amazing woman discussed her challenges with Cystic Fibrosis and talked about how the thing she feared the most everyday was climbing stairs, not her boss, not the pressure from her job, etc. but climbing the stairs on her commute to work at the subway station exit.  She was this amazing strong woman who spoke with passion about the disease and her organization “Emily’s Entourage” which is dedicated to research in the 6% of Cystic Fibrosis patients that are Ashkenazi Jews who don’t benefit from any of the new medicines that have recently arrived on the market.  Please check out her story.  It’s touching and it puts your life into perspective.  Actually it gave me a swift kick in the butt about complaining about my daily life, the tiredness from raising 3 small children and running around and my long process of being BRCA1 positive…going through reconstruction etc.  I have choices that she has never had to beat disease and I commend her so much for her fight in life!

http://emilysentourage.org

For me this was a day of driving again in my car post event with music blaring so I could think about all I heard and what I need to do to be better in this world.  The song I listened to today was the “Heart of the World” by Lady Antebellum.  This song is a love song about a couple and how they will beat the odds probably in a world were people so often get divorced but for me I see it as I have that strong love and family and the words in it about beating the odds have nothing to do with keeping the marriage going but keeping healthy and alive through everything life throws out at you.  It gives me the chills every time I hear it.

“The Heart Of The World”

Tin cans on rattlin’ pavement
Confetti scattered everywhere
She falls asleep in the seat beside me
Rice caught up in her hair
I don’t mind it, I keep drivin’,
Flying on these wheels of steel
A bit anxious, a bit nervous
The moment’s all that we can feelIf oil is the soul of the engine
And wine is the drink of the Gods
Forgiveness the road to redemption
Faith can still beat the odds
We’re meant to be baby hold on to me
You’ll never not be my girl
‘Cause love is the heart of the worldI leave him sleepin’ as I rise early
Always up before the dawn
The house is dark, but I see clearly
Kettle sings a morning song
The bacon’s frying, babies crying
I soak up the sights and sounds
Minutes turn to days and I wish that I could slow it down

If grease is the soul of the kitchen
And coffee the drink of the Gods
Routine too perfect to mention
Time is a thief I would rob
We’re meant to be baby hold onto me
I’ll never not be your girl
‘Cause love is the heart of the world

Oh, and hope is the soul of the dreamer
And heaven is the home of my God
It only takes one true believer
To believe you can still beat the odds

We’re meant to be baby hold onto me
You’ll never not be my girl (I’ll never not be your girl)
‘Cause love is the heart, love is the heart,
Love is the heart of the world

So after my drive my list of to do’s:
- ask my ob what of those 19 genetic disease I was tested for and possibly test for the rest to know what exactly my family might be carriers for— because you can be a carrier but never get sick
- enjoy my life, my ability to walk stairs with no issues and run around like crazy with my kids
- And most importantly in my journey with BRCA….be happy in the knowledge that I am in the home stretch with my reconstruction.  On February 27th I will finally have my swap out surgery. Expanders out, fake boobs in!  Though the process will not be entirely done.  I am almost there!  After that all that is left is remaking my nipples and tattooing them to look real and no one will ever know the difference.  Who I am showing anyway! HAHA LOL!  Obviously the husband but that’s probably about it, maybe, just maybe I’ll go to Mardi Gras and do the flashing the boobs thing!  Yea right. Oh and of course all my good friends, my sister, cousins…especially my sister and I will have to compare since we just went on this same journey together!!
Check out some of the links below about the different places that research these genetically inherited diseases.  And kudos to Har Zion Temple in Penn Valley for putting on such an important event. Also a shout out to the amazing women I just met from Basser Research Center who work closely with FORCE.  They are really right on in their knowledge and education of BRCA1 and BRCA2.
Thanks for letting me share,
Janelle

http://www.einstein.edu/genetic/jewish-genetic-diseases/

http://www.penncancer.org/basser/news-and-events/basser-events/

https://www.facebook.com/Philadelphia.PA.FORCE

http://www.facingourrisk.org

One thought on “Genetics – or as learned today..fitting into your genes.

  1. Wow, what an amazing post! So glad you were able to attend the event and meet such incredible people. Keep learning, growing, and empowering, my love. You are my inspiration!

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