My Thoughts on HD Genetic Testing

In my first post I said I would talk about getting tested in a later blog…here it is!

When I was eighteen, getting tested for HD was about the ONLY thing I had my mind set on. Most eighteen year olds would be like thinking about going out and drinking, or what they’re gonna do for their big day, but I was focused on starting the process of genetic testing. It wasn’t long until I told my dad of my idea and it was shot down (for good reasons). My dad did NOT want me finding out these results until I was older. At eighteen, I disagreed with this. I felt like I HAD to know. It was that feeling of pure curiosity. The unknown can be scary and exciting. In this case there’s really no excitement, however, I still wanted an answer. I wasn’t going to go against my dad’s wishes even though I felt I was ready to undergo this testing. So, my dad did something that he said he would NEVER EVER let me do…get a TATTOO! He made a deal with me that I was allowed to get a tattoo that I had been drawing up since sixteen years old IF I agreed to drop the whole ‘being tested at eighteen thing.’ I mean come on, would any teenager turn THAT down?! I don’t think so! So I made my way over to the tattoo shop, and got the symbol for HD on my right hip with the quote, “Life’s tough, be tougher” underneath (I’ll post the picture at the bottom of the post!) Believe it or not that was enough to make me forget about the whole testing thing I was going crazy about months before.

I must say that I am proud of eighteen year old Gia. I’m glad my dad talked me out of that situation. God only knows the results to my HD testing..and it was not my time to learn of those results. Eighteen is not an age to get tested for a disease as brutal as Huntington’s. For some, an immediate result is needed. For others, waiting is the best thing to do. Why stop life at eighteen when it really is just beginning? I’m glad I said no. Genetic testing for HD is a VERY controversial topic in the HD Community. There are some really h e a t e d conversations and debates about it. I stand firm with my opinion that younger is not better in this situation. Age and experience won’t even help when getting tested for something like this, BUT, the older you are, the wiser you are to plan for the future.

For me, a negative result would have me crying for hours on end. Possibly even months on end. I honestly have thought about and pictured myself sitting in a doctor’s office with my loved ones waiting for my results. In this thought of mine, the doctor comes in and shares that I am HD negative and everyone screams and cries of happiness. (Just a little FYI, the day I DO find out my results, I’m bringing alcohol with me, whether it be beer or champagne!) Well, that thought is the one I hope comes true for both my sister and I. That will be a pure bliss moment. Even with a negative result, I’d feel guilt, knowing that it skipped me but couldn’t skip my mom.

Now, you may be asking, okay so if eighteen wasn’t the time, when is? Right now my thoughts on testing myself stand at age twenty-four. I have prime reasoning behind that number:

1) At 24, I will have graduated from Undergraduate college AND Graduate School. My life will entering a new stage, starting a brand new chapter.

2) At 24, the brain is fully developed and all my decisions and actions are accounted for. I will no longer be in the ‘young adult’ area (at least I don’t think so.) Twenty-four years old IS young but you are a full grown ADULT at 24 is what I’m getting at.

3) At 24, I am hoping that I will be in a serious relationship. My significant other deserves to know what the future will be like IF and only IF it was a positive result because let’s be truthful…not everyone stays.

4) At 24, if I’m in this serious relationship and marriage is in the future with him, the future MUST be planned for. A positive result would mean plenty of talk about kids and major decisions would have to be made. At 20 years old, I am unsure about how I feel having kids IF I am positive, just doesn’t rub me the right way right now, but who knows.

I told you all what a negative result would mean for me..For me, a positive result would also have me crying for hours on end, in the long run, probably more like years on end. But I’d find the strength in myself to carry on life I normally would. I know with a strong group of family and friends that I’d never be alone and I’d have help and hopefully a loving, caring, boyfriend/husband. The thought is scarier than your worst nightmare. But to be completely honest, I don’t have much to say about what a positive result would mean to me. Frankly, I only think about being negative. Maybe that’s naïve, possibly selfish but I don’t care, it’s positive thinking! i believe my sister and I will turn out negative, I have faith. It WILL stop at the Mannone Sisters and will NOT be passed down to later generations..that is the HOPE that comes with HD.

photo copy

(this is my tattoo a couple days after I got it done, hence the peeling and scabbing!)


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