Huntington's Disease hope for cure everyday

[ScottySkis]

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I had this horrible illness know it's for few years
Overheating is summer time and lots of stuff I can't due any more
I been great memories from few great friends who I ski with
We need to cure all this tragic illness yesterday

 

[deadheadskier]

Man,

Sorry to read this Scotty.

Hopefully treatments improve and help you

 

[dblskifanatic]

Scotty that is a tough one for sure! I do hope that they do find a way to treat that. Hits at a young age! Sorry!

 

[ScottySkis]

Thanks everyone much appreciated I pray for everyone that ends yesterday I know children so it stops with me I know n for few years now

 

[Nick]

Hey Scotty, hang in there.

 

[Not Sure]

 

[JimG.]

Keep hanging in there buddy.

Not sure how many on this site knew about your illness but kudos to you for opening up about it to everyone.

 

[Glenn]

So sorry to hear the news Scotty.

 

[NYDB]

Damn man. Sorry to hear that. Hang in there.

 

[snoseek]

Dont stop fighting and hopefully modern science can give help. Sorry man hoping for the best

 

[180]

Sorry to hear, hoping you find a return to your health.

 

[thebigo]

This is terrible. Please let us know if there is a research effort to which we can donate.

I hope you keep posting.

 

[ScottySkis]

This is terrible. Please let us know if there is a research effort to which we can donate.

I hope you keep posting.

Huntington Facebook
"
Recorded sessions from the Virtual 36th Annual #HDSAConvention are now available!

Visit https://hdsa.org/about-hdsa/annual-convention/ to watch today!

#LetsTalkAboutHD #HDSAFamily #HuntingtonsDisease"

 

[ScottySkis]

Huntington disease new trails that shows potential for patients:
"""

Landmark CRISPR trial shows promise against deadly disease

Administering gene-editing treatment directly into the body could be a safe and effective way to treat a rare, life-threatening condition.

www.nature.com

'"

 

[ScottySkis]

From Huntington Facebook page another patient that describes his life effect by HD I feel the same:
"I'm a tough individual! I worked hard and enjoyed my life! But this disease got the best of me! It is not something you can ignore! The longer you ignore it the stronger it becomes! It starts slowly with anxiety and depression! Then the mood swings and anger issues! You slowly shut the world people out and you don't realize it's happening! You're no longer happy about anything! You try to push through but the harder you push the harder you fall down! All you want to do is be normal again and be able to go and do things! But you have little to no energy! You want to shut out the world and crawl into a cave! You start losing your balance you twitch sll the time its very depressing!"""

 

[ScottySkis]

Huntington Disease MRI FINDS biomarkers I not sure what that means but this webpage explains:
"

fMRI Identifies Potential Biomarker for Huntington’s Disease

Scans measure blood volume in the brain, assessing oxygen levels and helping to track progress of gene-editing therapies.

www.diagnosticimaging.com

,

 

[ScottySkis]

A panel of experts has developed guidelines around the ethics of gene editing. The New York Times reports on the committee’s work, which focuses on safety, equity, and burden on patients. HD was considered as an example of a disease where complex ethical issues might arise.

W.H.O. Experts Seek Limits on Human Gene-Editing Experiments (Published 2021)

The panel also called on countries to ensure that beneficial forms of genetic alteration be shared equitably.

www.nytimes.com

#LetsTalkAboutHD #HDSAFamily #HuntingtonsDisease

 

[ScottySkis]

I wish any political parties would care about health issues not just pretend to:

#"""HDSAFamily thanks Rep. Jake Auchincloss for cosponsoring #HR2050 the #HDParityAct. #HuntingtonsDisease families can't wait #2years to access crucial #Medicare benefits through #SSDI. Let's #PassTheHDParityAct in 2021!""

 

[ScottySkis]

From Huntington disease Facebook page:"
"The latest from our friends at HDBuzz! For more info about #HuntingtonsDisease & the #HDSAFamily please visit HDSA.org.

FULL STORY: https://en.hdbuzz.net/308

#LetsTalkAboutHD #CRISPR

A first for CRISPR gene editing could have wider applications for human disease - HDBuzz - Huntington’s disease research news.

Huntington’s disease research news. In plain language. Written by scientists. For the global HD community.

en.hdbuzz.net

 

[ScottySkis]

Huntington disease stuyy to relieve patients symptoms

UVA Study Aims to Relieve Huntington’s Patients’ Hidden Symptoms

A UVA nurse scientist and psychology professor are working together to help Huntington’s patients deal with the “emotional roller coaster” the disease can cause.

news.virginia.edu