My Life At-Risk For Huntington’s Disease : Genetic Testing

Hey guys! I’m back hope you’re all having a good weekend! I just wanted to share some more of my story with you all. For those of you who may not know, there’s a genetic HD test to see if you have HD or not. Those carrying the gene will either test positive or negative on it, so there’s a 50-50 chance I’ll get it. Nice odds! One of the worst parts about HD is that it can be handed down from family member to family member, so my dad’s side of the family has the gene. I found out that HD has been going back in my family for generations. Just think of how many people it’s affected not just in my family, but in countless others too? Only three of my family members tested positive for HD though. Thank God all the rest are ok!

My Aunt Tracy Martin, was only about 44 years old when she passed away from HD, I didn’t get to know her very well because my family is from Ohio and I live in Southern California, but I remember back when she was younger growing up I always loved visiting her and her 2 cats. My grandpa Dick Martin had HD too, he’s my dad’s dad. I used to visit Grandpa in the hospital every year we went out to see him in Ohio. He was in a nursing home just like my dad is now and he died from it as well. He was older though. He died when I was in high school and then Tracy died right after that. It was hard for me to deal with it all.  I will always remember them both! At least my dad is still alive.

11187803_10202853440055987_2017598809493245269_oFor me, right now I’m pretty happy with who I am and what I’ve done for myself. It’s taken a long time for me to get in a good place, but I’m doing what I love, and I’m getting older. I’m 26 years old now and I’m living out my dreams! I’m a writer, writing is one of my biggest passions in life. Its where I can be me all the time. I’m writing a dystopian novel right now and I’m almost done with it and I’m going to get it self-published pretty soon! It may take awhile but I’m going to do it! I’m reading a lot of sci-fi books, and young adult books, and dystopian novels, too. I’m also apart of a great new online feminist book club online called OurSharedShelf hosted by Emma Watson and I have two blogs this one and one about my dog Cinnamon.

I have a good life and a great family who supports me and loves me! What more could I ask for?12963393_10204581825264537_4072123501553355064_n1116038_4574609342216_1280786994_o Just thinking of where my life used to be back when my dad had HD, its like my whole life turned around from a very negative experience to an extremely happy one. I’m so grateful for that!

However, the one thing I am still having trouble with is deciding whether or not to take that HD test or not! It’s one of the hardest decisions I’ve ever had to make. Awhile ago, I was sure I wanted to take it, but now I’m not so sure. It keeps going back and forth and back and forth in my mind like ping pong balls bouncing around. A part of me wants to know the truth, I want to find out whether I have it or not. My dad never did and that only ever caused my mom and dad anxiety.

I can’t just push it all away and pretend like it’s not there. It’s like having the elephant in the room ya know? Other times, I feel like maybe I don’t want to know. I’m a very sensitive person, so if I found out that I have HD, it may mess me up a lot. Just thinking about all of this, puts a lot of stress on me. I think of my sister too who is one year older than me. She may get it too! What if she already has it? What if I already have it? Sometimes I think of these things, but it never does me any good. The only time I ever feel better is when I give it to God, he’s truly there listening to me and then I feel better. I can’t sit around wondering about these things, I just can’t because it’s probably not even true. I also wonder what would I do if I decided to have kids someday, knowing if I had HD would definitely help me know if I should have kids or not. I’ve already made up my mind that I don’t want to send this disease off anymore, especially not to my kids. I won’t do it! See the kinds of things I have to think about all the time? These are not the kinds of things I want to be worried about at such a young age, but its true for so many people like me and I just hope someday we won’t have to. It sucks too because I want to have a life full of happiness and joy, not one where I sit around mustering these thoughts in my head.

10292497_10202563554609032_1168833292099090508_nHowever, deep down in my soul, I know I need to know the truth, so I’m going to take that test, but only when I’m ready. I think I’ll know when that is, so until then I am going to live my life to the fullest because life is amazing and I don’t want to miss any second of it! I’ve always wanted to write a novel and look at me now, I’m actually writing my novel. Maybe if I hadn’t had HD in my life, I wouldn’t be where I am today. It made me stronger, so maybe bad things happen in life happen for a reason maybe we all go through these difficult times, these dark times of confusion and chaos not so that we can be defeated, but so that we can grow into who we really were meant to be. So, I guess if I did end up testing negative it wouldn’t matter to me because whatever happens happens for a reason, maybe me going through this is just making me stronger, giving me more hope, more faith than I ever thought I could. So just think of that when you’re about to get tested or not? Think of how far you’ve come and how strong you really are and what you’ve faced, just know that if you test negative or positive to this HD test, you can handle it because God made you strong enough to overcome any obstacle! You can do this! So can i!

I hope this helps some of you with your worries and doubts about all of this. Just know you aren’t alone in this! Many others like me, have gone through this too sometimes you just have to make the impossible decisions whether you want to or not. Anything is possible if you just believe and have faith! Just think it all through before you make your decision to take this HD test. If you want to take it, great! It won’t be easy, but it will be worth it! If not, that’s ok too, like me you may just need some more time to wait it out. Have patience and know that everything will be ok!

Testing may seem a bit daunting, but it’s not as bad as it may seem! I mean miracles happen every day right? What if you ended up testing negative on this disease? Think of how much relief you’d have just knowing that you don’t have to worry about getting it or not anymore.

What if they came up with a cure to stop HD for good someday soon? Wouldn’t that be awesome do you know how many lives that could touch? Think of how many people right now that are actually out there working on a cure for this disease. There has been so many cutting edge research out there where they’ve been testing for a cure! Remember that and take care!

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s