Huntington's disease - the hunt for treatment

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Huntington's disease is a hereditary and fatal brain disorder. There is no cure nor any disease modifying therapies to offer to the individuals that are affected of the disease. Nerve cells in the brain dies.
Åsa Petersén and her team have made completely new discoveries about Huntington's disease. They have seen that the involuntary movements at the onset of the disease are not at all the first symptoms. The disease starts long before that. Now they also have discovered what kind of nerve cells are affected.
Meet Åsa Petersén and her patient Tess.

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Huntington’s has torn its way through my family, I’ve lost many to it including my father.

Im 20 years old myself and it has had a hold over me almost every day of my life and sometimes the fear I may have it myself truly consumes me.

I have yet to get tested and I honestly don’t know how to approach the whole subject and I don’t know if I have the guts to do it yet, I know this may seem ignorant but I’m afraid I will loose myself if this happens to be my fate.

I need to be around for my family and I will do anything to assure this, I want to meet my children one day.

I really hope that this field of medicine makes some progress, the lack of conversation regarding the topic is nerve racking none the less.

To anyone else that may share my fear just know you are not alone, it is terrifying but it is a means to live your life with the greatest sense of purpose.

P.S. Any input good or bad or anyone else who may have there own story to share is more than welcome, we’re truly all in this together.

marshall

They said the same thing 15 years ago.

viderethevaccinatorfromhol

HD affects not only neurons in the brain, but also the gliacells, which are essential for normal brain function, and also other organs beside the brain. There is no drug yet successfully tested to prevent or delay onset or progression, but a healthy lifestyle and the avoidance of chronic stress have a huge influence on onset and progression of HD.

HWLange

Yeah I know all about the Psychiatric part of Huntington's!! I have HD and so did my Father, Brother, Niece, and now I am 51 years old and remember between 9-12 years old I took out all my anger at my father making me work in the garage on his cars when I hated working with him. I took the Kitchen knife and chopped and sliced all the fruits in the fruit bowl on the Kitchen table. later my Mom noticed all the fruits turning brown and questioned me about it. I denied doing anything, and just scared said "I don't know what happened." and now in 1991 barely graduated high school taking even special education classes with a C or D average all through school. I was a scared, bullied student by most all kids who got the chance! When I was about 19 I dated my first GF and out of high school was all excited and felling special for once in my life!! Had a car, GF, and although wasn't able or had any desire or will to look for a job. Dated this girl for a month who told me she was 15 turning 16 but invited to her next Birthday was only turning 14 and was 13. so I didn't think clearly about what was going to happen to me. But continued dating because her parents already knew we were dating and tok us places together too. Nothing was being hidden or secret. Until Her parents showed at my Dads house and told my dad they didn't want me dating their daughter, she was only 14. I didn't listen... and now register for life as a sex offender. we never had intimate sexual relations or intercourse, just all touching. Anyways, that was over 25 years ago now, and Since got divorced after 12 years marriage and 2 kids later...and My father being diagnosed with HD around age 46 and passed from suicide complications at 63 years old. My Mom passed at 73 In Hospice Care from a serious blood stream infection. My current wife and I took in their Dog which we all very much knew and loved to take care of, who also passed in 2020 from brain tumor and bad seizure. Guess this is Gods profound punishments for all my sins!! Could be worse, I was looking at up to 25 years in prison. Most would still think I should be there from stupid shit I've done and poor decisions. But we all make them in life every day. Just not usually to this degree!! I wonder how much the HD effected my thinking clearly back then, or apathy, or moods, attitude.

toddgilmore