Did you know?

It was recorded that Woody Guthrie had Huntington's Disease. He was born on July 14, 1912 and was a famous folk musician from America. His most famous song is This Land is Your Land. It was said that in the late 1940's is when the symptoms started to show and no one could diagnosis it. Many doctors told him he was an alcoholic and schizophrenic. But in 1952, it was confirmed that  he was suffering from Huntington's Disease where he inherited it from his mother. Once he died his second ex-wife, Marjorie, found the Committee to Combat Huntington's disease, which was later re-named the Huntington's Disease Society of America. Unfortunately, three children that Guthrie had with Marjorie and two children from his first wife inherited the disease from their father.

One More Video!!!

This video is about a doctor who has had Huntington's Disease for while. In this video you can really see how they act, talk and think just by watching him. Plus the emotional toll it is for his wife that he has it. It gives a good idea on what Huntington's really does to you.

Why should WE care about Huntington's Disease?

Huntington's Disease is important to our society. Huntington's Disease is incurable and about 50,000 people are "at risk" for Huntington's Disease. One out of 10,000 American's has the gene, and as we said before it is generational, meaning it will be passed down from generation to generation. The Huntington's Disease Society of America is funding research to find effective treatments to cure Huntington's Disease. They are using methods like, consortium, clinical studies, support of the NINDS (National Institute of Neurological Disorders and Strokes) induced pluripotent stem cell, participation on International Research Initiatives, and many others. A fundraiser that helps benefit Huntington's Disease is a marathon called, Chicagoland Sunset Half Marathon, 10K, & 5K . It is run by Rachel and Sara (the person from the interview) from Team Run HD! It is a great way to help raise awareness about HD and to give money to a great cause! Here's the link if you are interested! http://allcommunityevents.com/gfasf/half_marathon_5k.html and here's the link to their website  www.teamrunforhdhd.com . If you have any questions about the marathon you can contact teamrunforhd@gmail.com!! 

Another Video on Huntington's Disease!

 

 

This video is about a family that is struggling with Huntington's Disease. It is very sad but gives a good idea about what happens to the victim and the emotional toll it is on the loved ones.

 

 

Interview

We conducted an interview with Sara Rockwell from Team Run for HD. Her family has a history with Huntington's Disease and she is at risk for having it.

Do you know anyone with Huntington’s disease? If so who?

My Father died from Huntington’s Disease on Christmas morning, 2008.   My cousin Tonya died from Huntington’s Disease about six months after.  My uncle was diagnosed with Huntington’s Disease, but chose to take his own life just before Thanksgiving 1985 (I was just a baby!)  Everyone else in my family that has had it has passed away before I was born.  Currently, my brother and myself as well as three cousins are living at risk and are untested.  I have also met many people with Huntington’s Disease as a result of my advocacy work and fundraising projects!

When people have Huntington’s Disease, what limitations do people have?

HD is different for everyone, in my experience.  My father struggled more with the psychological effects, and was often violent and paranoid.  At first they thought he might be schizophrenic and was given anti-psychotics before they diagnosed him with HD.  He became very depressed and his alcoholism spun out of control.  The HD seemed to make his existing depression and anxiety 10x worse.  My cousin Tonya very much suffered the physical effects (chorea).  She was arrested multiple times for public drunkenness, having never drank in her life.  It was very embarrassing for her that she couldn’t walk straight and slurred when she talked.  She couldn’t work, and was homeless for some time before she was committed to a nursing home.

That said, I was in DC for some outreach work, and I met a man in his early 60’s with HD.  I could tell that he had it, but it was so obvious that he was receiving the best treatment possible.  He had mild chorea, and had to speak very slowly, but seemed to have a really good grip on the disease!

With the disease, what is everyday life like?

I can’t speak to what its like to actually have the disease and daily life, but living with someone with HD is incredibly destructive.  I often found myself being a parent to my father who became a shut in.  He refused to leave the house, was extremely fearful of being watched, and would not take his medicine.  As a teenager, it prevented me from having a normal life, and forced me to grow up before my time. He would constantly drop lit cigerettes, resulting in small fires.  It was terrifying to imagine him home alone and setting the house on fire.  It was impossible to keep his nutrition up, and when he passed away, he probably weighed 75 lbs. 

What is it like personally knowing someone with this Disease? How does it affect you?

Being around someone with HD is devastating.  It is very difficult to watch someone deteriorate day after day, and slowly lose their ability to take care of them self.  It is debilitating for the person, and absolutely traumatic for everyone around them.  I have HD nightmare at least once a week. 

With Huntington Disease, what is the quality of life like?

The quality of life varies so much for HD patients.  I have seen people with the resources to get the best treatment available.  It’s still debilitating, but with proper care, they can at least live out their final days with dignity.  Sadly that is usually not the case.  My experience has been the HD is incredibly destructive, exhausting, and expensive.  Proper care is hard to find, and out of reach for the average person.  Lack of awareness leads to judgment and stereotyping.  A person with HD can’t just walk down the street without being stared at with looks of fear and disgust.  They can’t drive, they can’t cut their food, they can’t tie their shoes, and are completely dependent on other people to care for them.  A life with HD is generally no life at all.

Huntington's Disease on the fourth autosomal chromosome

Huntington's Disease effects the fourth autosomal chromosome. The problem with this DNA causes a CAG repeat more time than it has too. However, with a person who has HD, it repeats 36 to 120 times. This gene is dominant and is passed down through generations. If one of the parents have Huntington's Disease their offspring has a 50% chance of getting the disease. If both parents have the disease then all the children will have it. The picture below is a pedigree showing the off spring with a parent who has the disease and a parent who doesn't.

This shows how Huntington disease is a dominant gene and is passed through generation to generation disease.

Organizations and Websites for more information on Huntington's Disease

An organization that specializes in Huntington's disease is Huntington's Disease Society of America. (https://www.hdsa.org/ ) This organization helps families deal with loved ones who have HD, and also gives a lot of information on HD. Another organization that is very helpful is, Huntington's Disease Youth Organization (http://en.hdyo.org/). They specialize in children who have Huntington's disease.   The U.S. National Library of Medicine is a great website that tells you the cause, symptoms and a whole lot more information. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001775/

Images from: cymer.com and hdyo.org