Mental Health Awareness Month. Huntington’s Disease Awareness Month. I’ve been ok, as you could have guessed by my absence. I have also been super busy, new job, studying etc. Life just gets in the way. I was told they have enough people in my age range for the study so they will let me know if another one comes up. This annoyed me, I just really want to help but I feel like no one really wants to help me. It’s like “You have your results. You’re not symptomatic. Get on with it.” But I want to speak to symptomatic people. I want to gain knowledge and experience. Even Scott seems to have pushed it aside. I leave books around and send him articles… “Thats good news” “you’re reading ANOTHER book on it” is all I get. If I don’t bring it , it isn’t spoken about and I am bored of being the only interested one.
Mums MH hasn’t been great so we have been looking after her. She crumbled a bit but the Drs have said she is still non-symptomatic still! 60 years old, amazing.
This month be extra nice – don’t underestimate smiling faces, we never know what they’re hiding. Happy MH & HD awareness month! xoxo
I have been enrolled into a research programme for Huntington’s Disease. Me and my mum will be 2 of 80 people in this study, due to our history with the disease. Every 2 years we will go for an MRI & other tests to monitor or development(or lack there of) of our symptoms. Another thing I’m super excited about! Me and mumwill be some of the first selected to go forward into clinical trials etc as part of this programme. Mum is 60 and still has not started to develop symptoms! Xoxo
My current book obsession, I absolutely love this book, people might ask “why read pretty much into what the future holds for you?” Why not? I am going to have to deal with it eventually, why not grab some first hand experience early on?
I should probably be scared. I’m not. I’m pretty nonreactive about the diagnosis itself but it has made me more self aware. I pay attention to my moods, I take a deeper breath before I let something annoy me. I live better now. I make better choices. I’m excited to try and help people, because that’s what I get to do now that they’ve diagnosed me. My family history with the disease allowed my Dr to enter me straight into research programmes to allow them to use me/my blood/my MRI’s in research… I’m not sad about any of it.
6 weeks ago, I was told by the Dr that I test Gene Positive for Huntingtons Disease. 43. That is my CAG Repeat.
“Huntington’s disease, which is often called HD, is an hereditary disorder of the central nervous system. It used to be known as Huntington’s Chorea or HC. Huntington’s disease usually develops in adulthood and can cause a very wide range of symptoms. The disease affects both men and women.” https://hda.org.uk/hd
I’m not sympotamatic, yet. I am only 22 though, symptoms could develop anytime now, I just have to wait it out. I inherited the gene from my mother, who inherited it from her mother. Luckily, I suppose that’s the right word, no-one in my family has yet to of developed symptoms before their 60s, so they have all lived a relatively full life. Mum still hasn’t developed symptoms and she was 60 on March 1st, so I have my fingers crossed. I’ve known about the disease since I was about 13 years old, so I am not surprised nor am I upset or ashamed by the diagnosis. However, I have never dealt with the disease first hand, so no doubt I’ll be in for a shock when it does eventually start to affect mum, or myself but for now I will continue to go about my life as I was before it was given to me on a piece of paper and I will continue to enter into the research programme to try and help others – my Dr’s are intrigued into my family’s history with the disease, she said she’s only encountered about 4 other families that have such late development of symptoms, so I’m hoping me and mum can help, we can only try. I will try to be here for anyone who needs it, although I’ll probably be the one with all the questions about how you guys and how you’re all so brave and brilliant. For now I am going to continue with trying to keep my faith bigger than my fear, wish me luck.
All my love,