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Share your quitting journey

Gene Therapy and Better Things Ahead

tibbetsethan
Member
1 5 110
‎10-10-2020 01:28 PM

Hey everyone! I know I've been gone basically for the past few days. I have been making lots of phone calls and also then laying down when I get tired. I got accepted for screening for a Gene Therapy trial for Huntington's Disease. If I pass the screening, then I can get brain surgery so they can inject good DNA into my striatum. This is to try to slow the Huntingtin protein that destroys our bodies as HD warriors. I won't be cured but it will give me longer time and then also will help further research on coming up with a treatment for kids with JHD or who are born with the expanded HD gene.

I'm kind of stressed over the process, you know... getting my head drilled on and a shot into the middle of my brain while I'm semi- conscious and then having to get 4 Lumbar punctures throughout 5 years. But I would do anything if it means my friends and family and other families not having to deal with this terrible disease.

BUT, it's for a really good cause, and if I get some time added to my life then that is what matters

I'm feeling pretty positive. I had been having a lot of issues with my heart, we thought, but really I am having problems with anxiety and panic attacks. Today was a good day though because they checked my heart and did a bunch of tests and came back that my heart is fine, my blood pressure is from anxiety and the fluid and throbbing is being taken care of with compression and also got prescribed anti anxiety meds for now which are helping a lot.

Overall I'm in a pretty good mood today, I'm blessed to be here. I'm sorry I randomly disappeared but I just wanted to say thank you and that I miss you all.

16 DOF!!!
-Ethan 

5 Comments
Christine13
Member
‎10-10-2020 02:26 PM

Ethan, you have great courage.  I admire your strength.  So glad you got some anti-anxiety meds too.

Cousin-Itt
Member
‎10-10-2020 03:15 PM

Ethan you have great courage and strength  I wish you and pray for the best outcome 

tibbetsethan
Member
‎10-10-2020 06:19 PM

Thanks Christine13‌ and Cousin-Itt‌ I appreciate your kind words. Trust me, I'm definitely not courageous, I'm actually terrified. But that's okay, there's nothing for sure at this point, they still have to scan my brain and do a bunch of stuff but if I do get in, I know it's really painful but if it gives me or anyone else time then it'll be worth it. If you guys are looking for a tear jerker, there are two really low budget films that I think you should watch. I think everyone should watch. They're definitely the saddest movies you'll ever see but they are why I want to do whatever I can to help out. I'll link them.

Two Award-Winning Documentaries for Huntington's Disease 

They are both here on this webpage for free.

It takes about an hour to watch, but it'll be the best thing you can do for us HD and JHD kids / adults. 

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YoungAtHeart
Member
‎10-10-2020 07:37 PM

I hope, if that it what you want, that you get accepted into the trial.  If it helps you AND others, seems all good to me!

Glad you got something for your panic attacks.  Only dealt with them one time in my life, but they were quite something!  Don't think you need THAT on top of all else with which you deal.

i hope you have a peaceful, restful night.

And - congratulations again on quitting smoking with all you re going through!  You are a CHAMPION!

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elvan
Member
‎10-10-2020 09:08 PM

Ethan,

You are amazing, l really hope that this study helps you & others, never forget that all you are doing is benefitting someone who is dealing with the same wretched diagnosis. Congratulations on staying quit. That is something you are doing to help yourself!

Ellen

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About the Author
I was raised in Small Town Texas, started smoking at age 13. At age 19 I started vaping on and off because I liked the rush. At 21 I ended up getting tested for Huntington's Disease because my family on my Mom's side has it and came up positive. Then early the next year I was formally diagnosed with it active as JHD due to muscle movements and weakness called Chorea and Ataxia which began when I was 14 years old. I use walking assistance now and have been in and out of the hospital a lot, but I haven't stopped that from wanting to quit vaping and cigarettes. In fact, vaping was making me so sick, I decided enough was enough and that I wanted to quit. So here I am. I'm proud to be an Ex!