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By Matthew Santamaria (msantamaria@hdsa.org)

Kiersten Wood lives in Pittsburgh, Pennsylvania with her sister, Kierra, and the rest of her family. In 2005, Kiersten’s life would change forever. Her mother was the first known family member to be diagnosed with the gene that causes Huntington’s disease (HD).

HD is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

“She is considered a ‘Pop Up’ meaning that she is currently the only one in my family who has been diagnosed with HD,” Kiersten explains. “Like most families in this community we didn’t talk about her diagnosis. She was in denial for a very long time.”

By the summer of 2013, her mother started to experience more of the symptoms of HD and would eventually have a mental breakdown. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

By the fall of 2013, her mother was placed in a nursing home.

“It was shortly that we decided to start fighting back against this horrible disease,” said Kiersten.

Her sister, Kierra, started to sell Hearts for Huntington’s at her local high school. The family has also organized basket raffles to raise money. The Wood family also started the local bowl-a-thon that was in honor of their mother.

Kiersten and her family are very active with HDSA’s Western Pennsylvania Chapter.

“The Chapter has several big fundraisers including Fast Track Pittsburgh, Charlottes Run, and Big Dog 5K,” Kiersten explains. “We try to make it to all of them.”

Her family has been to several HDSA National Conventions. Kiersten and Kierra joined HDSA’s National Youth Alliance (NYA) and have attended NYA retreats in Pittsburgh. For several years, the NYA is a collection of children, teens, and young adults from across the country that motivates young people to get involved in their local HDSA Chapters, Affiliates, and Support Groups.

“I was on the NYA board for about a year,” said Kiersten. “Now I am a regional lead in my area. We are going to keep fighting this disease head on.”

Currently, her mother is in the late stages of HD and Kiersten has not yet decided if she wants to be tested.

The decision to get genetically tested is difficult to make. Each year, 5-10% are tested. It is never the right or wrong decision to be tested. There are people that see no benefit in knowing that they will develop the disease while others want to know in order to make informed choices about their future. It can take up to several weeks to receive your results from the genetic testing center.

However, one thing is for sure that Kiersten is not giving up on raising awareness to find a cure for this fatal disease.

Kiersten has a message for the HD Community:

“I am so grateful to be a part of something that gives me so much hope, joy, love and purpose! I love that we are fighting HD head on and raising so much awareness for this horrible disease. Don’t ever lose hope. We are a force to be reckoned with. I love each and everyone of you!”

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Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.HDSA.org or call 1(800)345-HDSA.

This is a story featuring a personal experience with Huntington’s disease. If you would like to have your story told please contact Matthew Santamaria at msantamaria@hdsa.org