Huntington's disease - the hunt for treatment
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- Опубликовано: 8 мар 2023
- 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.
Yeah! You share same story as mine...my father is suffering from this desease too badly...he stopped talking, don't know whether he even recognises me or not..he got his legs and hands broken several times because of choreatic symptoms of this desease...now he can't even stand up on jis own... don't even open his mouth to eat..his condition is worse.. don't know how everything is gonna be...and the worst part is i think I'm catching up some symptoms too...like my legs and hands often starts to shiver randomly..for eg, when i move my leg just like we move our leg to press the brake of a car, it moves while shivering,and same with the hands.. sometimes legs start shaking while I'm just standing...so yeah! I'm sure that i caught this desease too..bt i don't have any courage to tell my family members about this, I'm just 18 and I've decided my upcoming life for upcoming 20years.. I'll do regular exercise, have a healthy diet everyday..yeah, in this life, marriage is something which is not in my fate..cuz I don't wanna see my wife and children suffer as i did because of my father
.. there's a list of some pretty moments that i wanna experience before taking my life like
Seeing my elder brother's marriage... play with his kids, play with my sister's kids, go on a trip with my family all over india..and yeah i won't die before my mom..cuz I don't wanna imagine how will she loose herself after my passage..when she will die because of old age..just after 1 or 2 years I'll die too... I've made my life plans and accepted everything which is gonna be with my life..i just don't know, to who i can share these things with..
They said the same thing 15 years ago.
I have heard lots of promises, for 47 yrs , yes I'm over the hope , or hopefully, yes it makes me pissed off 😡
@coraldell3091 I'm also in my last years because i will not carry this monstrous disease until the end. (51 years old now, and it started around my 35th). For myself it's not very important anymore. But you know, nephews and nieces etc. The scientists may use me for all kinds of research. After i passed away, they will also take out my brain and take samples of other tissues.
They say it every year and it is always 10-15 years away. Just far enough out to milk desperate people for grant and donation money that, if you are lucky, will spend .10 of every dollar on the actual research. Like:
National Multiple Sclerosis Society: Cynthia Zagieboylo (President & Ceo) $473,993 pay
Yep. A non-profit is a great way to make a fuck ton of money.
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.
I get so mad if people in 2023 still say, it's a brain disease. It is so much more. I have fought 8 long years to finally get my strange pain recognised as part of my HD. I am suffering from central Neuropathic pain. In one study they were surprised that the cells in my lower legs were not working properly. That has nothing to do with my fxcking brain! It was mitochondrial dysfunction caused by the mtHTT. I go to the gym 3 times a week. I eat healthy etc etc. Some doctors should read more scientific publications and should get rid of the tunnel vision syndrome.
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.
Testing in utro is a option, it is not for everyone of course.
But it completely stops hd for the next generation. ❤️.
My dad had it both my brothers and sister and I so far has escaped it
Have you been tested?
Great, 15-20 years does nothing for me.
We are sorry for you .. but you don't know miracles happen
Or me.
There were so many miracles promised during the last 10 - 15 years. Hundreds of millions were spent on science and medical trials. Some of them were so promising that the entire medical world was paying attention. Big words were published. Medical Scientific Miracles.
All of them were stranded during phase 2 or some even during phase 3 trials. Some people died because of things going wrong.
Our community had to deal with so many disappointments during the last couple of years.
I personally participated in a few of them. Some were really terrible and painful. I didn't do it for myself. It's too late for me. But I have nephews who are at risk. I saw two brothers and a sister from a friend of mine dying from JHD. I lost my dad. My sister is I'll and I am not doing fine myself. We do have 7 in our direct family and we only know about this for 15 years or so.
I understand that hope is the only thing that is left. But there isn't any progress in curing or even slowing down HD. Nothing at all.
So if some people are not that positive anymore, you should understand why that is. Many of us saw some horrible things happening and lost every bit of hope. Don't blame them.
Hugs😢
❤❤❤❤
You'll find your answers in the Bible but you've got to come open like a child.
Just shut up. The buble does not help at all.
Answers to what.. ?
What about if your adult who doesn't believe in god ?
Go away with your bible. It's an insult to my intelligence and to many others.