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By Matthew Santamaria (msantamaria@hdsa.org)

In 2006, Texas resident Jared Sheffield married the love of his life, Brittany. One year later, their daughter, Kyleigh, was born. Soon after that , they welcomed a son named Travis and another daughter named Madilyn.

Jared has an amazing family and everything that he wanted in life.

One day on a routine visit, his doctors wanted to know his family history. In 1983, Jared was adopted at birth by Rick and Jody Sheffield. They also had a daughter named Rikki. Jared had no knowledge of his biological family history.

“As I was growing up, I always knew that I was adopted but it never crossed my mind to search for my biological family; especially since I had a wonderful life with my adopted family,” said Jared.

Once Travis was sick, Jared was more motivated to know his family health history. In 2016, his search was successful and he located his one brother and two sisters (Kristi and Staci).

Jared would soon learn that his biological mother passed away in November of 2008 due to complications from 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.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

“I had no clue and had never heard of HD until my sisters explained what this terrible disease is,” Jared explains. “I went home trying to process all of this and did a complete research about HD.”

During his research, Jared learned that he has a chance of inheriting HD. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

In that same year, Jared wanted to be tested for HD.

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.

Jared tested positive for the gene that causes HD and Kristi tested positive as well.

Since then, Jared and Kristi have participated in many clinical trials at the University of Texas Health Science Center- Houston. This is one of the 50 HDSA Centers of Excellence that provide an elite team approach to HD care and research. Professionals have extensive experience working with families affected by HD and work together to provide families the best HD care program.


Jared and Kristi are treated by Dr. Erin Furr-Stimming. She is the Director of the University of Texas Health Science Center- Houston. They both have praised the care they have received from Dr. Erin Furr-Stimming.

“Dr. Furr-Stimming has become so much more than our physician,” Jared explains. “She has made it clear that her mission is to find a cure for HD, and reassures us that we have an amazing support system. Dr. Furr-Stimming is always thorough in our meetings, and she always makes sure to reach out to us just to check in and see how we are doing in between appointments.”

Each year, they volunteer at the Houston Team Hope Walk. The Team Hope Walk Program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease.
 

Currently, Jared is working to educate all local law enforcement about HD. There have been document cases of people with HD having difficult interactions with law enforcement because their symptoms are misidentified.

For more information about HDSA’s Law Enforcement Training Guide, click here

 
Jared has a message for the HD Community:

“Find something positive in every day. Stay active and surround yourself with those you love and cherish. You have been assigned this mountain to show others it can be moved. Live everyday to its fullest.”

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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. Every 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 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.

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