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Life With Huntington's

The Genetics...

Huntington's Disease results from a mutation of a gene called "Huntington." People with this disease have extremely long repeats of the coded instructions CAG (cytosine-adenine-guanine) The lengths of these codes sometimes determines what age your symptoms will develop.

Individuals with 28 or less CAG repeats do not have Huntingtons. Those with 40 or more coded repeats have the disease.

If your parent has/had Huntington's Disease, you have a 50% chance of inheriting it. However, symptoms normally develop after age 40. Many children with parents who have the disease choose not to get tested early on, because knowing that you have the disease can prove to be traumatic.

Once diagonosed, you may live 10-25 years or more.

7 in every 100,000 people worldwide are affected with Huntington's

Huntington's is not fatal, but the symptoms usually shorten life span.

The Symptoms...

  • degeneration of nerve cells in the brain

  • memory loss

  • chorea (rapid, jerky, involuntary muscle movements)

  • dementia (disorientation, confusion, and agitation)

  • rapid weight loss (sometimes results from difficulty chewing and swallowing)

  • uncontrollable emotions (anger, agression, paranoia, hyper-active.)

Testimonials...

“There are not many people left in this world who remember my dad as the person that he was, not the stranger that this disease has made him into.”

"This may sound callous, but it is so hard to see him incapacitated the way he is, unable to speak, unable to make any controlled movements, just sitting there with his head lolling about as he coughs and sputters.”

“50%. That means that there is a 50% chance that I don't carry the gene. It may seem like there are a lot of percentages in my favor, but would you go to sleep soundly tonight if you were told that there was a 50% chance that you'd be brutally murdered in your sleep? 50% all of a sudden doesn't seem very high.”

Hardships...

People with Huntington's must live with a deteriorating body every day.

At first, their fingers might start trembling. Then their hands might start to shake. They have to live knowing one day they won't be in control of their body at all. Individuals also have to go through losing their memory. Even simple things, like forgetting where you put your wallet, can prove frustruating, right? Now imagine a person with Huntington's, who is just starting to forget who their siblings are.

Living with a person with Huntington's is almost as terrible as having the disease itself. You must watch as your loved one fades away more and more each day, and as the disease gets worse you must bathe, feed, and dress your family member with Huntington's. When you go out, you have to endure the stares of curious little kids and rude adults. You have to arrange for life after they're gone and pay for medical bills while they're alive.

Treatments...

-Tetrabenazine (Common Side effects include depression and suicidal thoughts)

-Xenazine

-Trichostatin C (Trial drug being studied to treat cancers)

-Paroxetine (used to treat anxiety)

-Memantine, Rivastigmine, and Donepezil (used to improve cognitive abilities)

-Dried orange peel and Valerian Root are natural remedies used to treat chorea

-Exercise. The drugs prescribed to relieve symptoms work better when used on those who exercise regularly.

Interesting Facts...

-Huntington's is most prevalent in

Lake Maracaibo, Venezuela where every 700 out of 100,00 people is affected

Sources:

-Web Md

-Healthy Home Guide

-Huntington's Treatment

-A Survivor's Guide To Huntington's

-Huntington's Disease Drug Works

-Casey A's Blog

-netdoctor.com

Mutation is located on chromosome 4

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