Gene Therapy and Better Things Ahead

Blog Post created by tibbetsethan on Oct 10, 2020

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!!!