[zodac]

As you may have noticed in the January Foldathon thread, we're trying to raise the profile of one of the lesser known diseases covered by the [email protected] Project. So, this thread has been made for people to discuss the disease itself, and any of your experiences with the disease (either yourself or your family), if you wish of course.

Before we begin, I'd like to make something clear. These is not a place for medical advice, and it is not permitted here. Feel free to talk about what you went through medically, but no advising other people on remedies and/or drugs.

With that out of the way... here's the info that was posted in the Foldathon thread:

Huntingon's Disease

Huntington's Disease is an inherited brain disorder, which affects the central nervous system. Nerve cells become damaged, which causes various parts of the brain to deteriorate. This can cause symptoms such as:

• Involuntary movements (chorea)

• Speech impairment

• Short or long term memory loss

• Cognitive abilities (planning, abstract thinking, supressing inappropriate actions are all affected)

Approximately 1 in every 10,000 people suffers from Huntington's (~30,000 in the US; 5,000 in the UK). It is inherited from parent to child, and is caused by a faulty gene, with a 50/50 chance of the child inheriting it. A person who inherits this gene will develop Huntington's at some time in their lives.

There is currently no cure for Huntington's, nor is there any way to delay the onset of HD for someone with the faulty gene. Treatments are available to lessen the symptoms listed above; however, even then they cannot be removed completely. The average life expectancy of someone who has been diagnosed with HD is in the region of 15 years.

Here is a brief video interview of a man who suffers from the disease, which not only outlines the disease itself, but also highlights the struggles people with the disease go through:

You can find out more about the disease by checking the Huntington's Disease Society of America, or the Huntington's Disease Association (UK). There are also a couple more in-depth explanations of the disease and it's causes below:

Spoiler: Huntington's Links

Huntington's Disease Society of America

Huntington's Disease Association

What is Huntington's Disease?

The Genetics of HD

If you'd like to talk to someone for more information, ENTERPRISE is available to PM. He was tested at 18 (and is now almost 23), and is fine with people asking personal questions about his experiences.

Now, the info above is clearly not a full explanation of the disease. Feel free to post more information. We'd like to increase our understanding of it, but try to make it simple enough for the rest of us to keep up.

 

[Eaglesfan251]

Can't wait, sigged.

Woops wrong thread.

 

[zodac]

A question from the Foldathon thread, which I'll post here:

Quote:

Originally Posted by Sainesk

and on topic, I have a ? about Huntington's disease, do we know what triggers when a person starts developing it? or is it random at what age it starts at?

I'm far from an expert in the field, but from what I've read, the time for the fault gene to "trigger" the disease is completely random. The usual is in the 30-40 years old range.

A better answer is available here though:

http://www.medicinenet.com/script/main/art.asp?articlekey=386&page=2#2zhowcommon

 

[zodac]

No-one wants to discuss it?

 

[OutlawNeedsHelp]

Quote:

Originally Posted by zodac

No-one wants to discuss it?

Well, I do not know much about HD, and have nothing much to contribute to the conversation. I would assume others feel the same way.

 

[zodac]

You could always ask questions. If there's no-one around to answer, I'd go find some info.

 

[ENTERPRISE]

I meant to pop in again the other day, my apologies, I have been rather busy. However as for those wondering, the age at which HD starts if you will is not set. Technically my HD will progress further and further, I may not show symptoms for years..or I may start tomorrow, unfortunately there is no telling. While my father who is 50+ shows no symptoms ( That is awesome ), does not mean I would last till I am 50. The disease depends on the CAG repeat errors, the more repeats you have determines the onset of symptoms, its not an exact science, but gives you an educated guess as to when it may start making you show the symptoms of Chorea ( Jerky movements etc ). I at this point do not know how many repeats I have in my genome, but I am looking into finding out. Another tough decision but I think I should !