Research Programme

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

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“sometimes it’s okay if the only thing you did today was breathe”

​Not having many good “mental health” days recently and I couldn’t tell you why. So today that is what I am trying to focus on before I go back to work. Colouring in, catching up on my TV programmes, bubble baths & good comfort food – today it’s leftover pasta and red sauce from the lasagne we made last night and loads of cheese, with a bowl of speedy fruit salad! Doesn’t ever look pretty but always tastes bomb AF. 

“let your faith be bigger than your fear”

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,

Elizabeth

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