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I came home from college one summer to my mom who had just taken a test for huntington's. Her father and brother suffered and died from it, so she wanted to get tested. She tested postive. Shortly thereafter she exhibited signs of the disease, suffered severe anxiety, and commit suicide. My sister and I have not been tested, and live with a fifty percent chance of manifesting the disease.
Huntington's Disease is the closest thing there is to hell on Earth, at least on an individual level. If you are not familiar with it because it is a fairly rare genetic disease, Google at your own risk. Typing out a very detailed explanation would be very triggering for me.
I found out about a year ago that my family has Huntington's Disease. I have an aunt who has it but I always figured it was Parkinsons or something and was too afraid to ask, being a younger teen when she started becoming very noticeably symptomatic and only seeing her once a year or less. I have not seen her since around 2013 and am afraid to see her again. Her brother, my grandfather, also has it and as of last time I saw him was mildly symptomatic...but that was a year or two ago and he is probably worse off now. My father tested positive as well, putting my brother and I each at a 50/50 risk of also being positive.
I was 19 when I found out. My parents were about a year into the process of separating and my mom was actually the one to tell me because my father, always being one to sugarcoat life's dark truths, opted to never tell us kids. Go figure right? My relationship with both of my parents is not super healthy but for very different reasons. My mom and I are close, and she depends on me a lot for emotional support and I feel like I can't lean on her because she does not have the solutions to my problems (HD-related and otherwise) and lately has been calling me and breaking down into tears due to stresses on her end. My dad and I have a complicated relationship that since the separation and eventual divorce, has been mostly communicating on a need-to-know basis due to events that made me lose faith in him after my parents began fighting. If I choose to ask him for help at all, it is either financial help or asking how to fix something in my apartment, never for emotional support because we have never seen eye-to-eye on an emotional level even when I was a young child. I love both of my parents but feel unable to be completely honest with them whenever I struggle in life, especially in this case.
I worry about my father showing behavioral symptoms, though I may be overanalyzing and paranoid. He has not been able to keep a consistent job since leaving the military five years ago. There have been a couple of occasions where he acted really out of character. I fear he was/is depressed, and part of the issue that contributed to fights between my parents was that he would often si
... keep reading on reddit β‘Top 6 tech universities and what they charge tuition and other fees per year w/o food/housing:
MIT ~$55K
Stanford ~$70K
Harvard ~$68K
Oxford ~46K
Catech ~56K
ETH ~2.3K
Hi there,
I read somewhere that the type of test Nebula offers is not accurate for diseases like HD, where sequence length is required. However, I see in my results that there are variants on the HTT gene.
What does this mean? Is it that it is finding an insertion, but cannot be sure of the CAG repeat length?
AB
Here is the budget, the NASA cuts start on page 90.
The five Earth science missions that will be cut are: Radiation Budget Instrument (RBI); Plankton; Aerosol; Cloud; ocean Ecosystem (PACE); Orbiting Carbon Observatory-3 (OCO-3); Deep Space Climate Observatory (DSCOVR) Earth-viewing instruments; and Climate Absolute Radiance and Refractivity Observatory (CLARREO) Pathfinder. Additionally, WFIRST will be cut, which was supposed to be NASA's next major space telescope after JWST.
This is clearly quite bad news for NASA, especially so if your career is based on monitoring the Earth's weather and climate.
I have HD and I'm blogging my first-person account of experiences and symptoms and experiments I'm doing including diet, exercise and supplements. Mostly it's a log for my family and the next generation (status unknown).This post is about finding there's a gap, especially in the post-testing, pre-advanced stages and relating to non-neurological symptoms.
https://masteringthedecline.home.blog/the-gaps-in-care-for-huntingtons-disease/
Hey guys! I'm currently wrapping up my freshman year of college for Computer Engineering and I'm throwing together a resume. Is it worth it to list this under the Education section?
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When do you realistically think we will have effective treatment for Huntingtonβs, or when will we find out whether the clinical trials are successful?
If anyone knows, Iβd also like to find out what problems people might face even if there is a cure? For example, letβs say they find out after clinical trials that Ionis httrx treatment is a success, how long would it take for it to be available to people with HD? Would it be straight away? Would everyone who is at risk rush to get tested so that they can cure themselves of HD if they have it?
Obviously itβd be awesome news if they have effective treatment, but if it doesnβt cure the disease, and just slows down or halts the progression, then it would be detrimental that this drug is available as soon as possible to help the people that are already symptomatic.
Ps I donβt actually have HD, I just know someone that does.
Thanks!
