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By Matthew Santamaria (msantamaria@hdsa.org)

No mother should ever have to bury their own child. It is a feeling that you cannot explain and Teri Hooper will never forget.

She resides in Riverside, California and is a retired elementary school teacher. For the past ten years, she watched her husband and youngest son exhibit behaviors that she did not understand.

“My husband became hyper focused on seeing every specialist under the sun in an attempt to get an accurate diagnosis, my son on the other hand, did not believe anything was wrong with him,” Teri explained.

He was given one diagnosis after another which included bipolar, anxiety, catatonia (inability to move normally), and then his bipolar was changed to schizophrenia. Her husband was being taken care of by a psychiatrist and neurologist at the University of California, Irvine, one of the 47 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.

Her husband did not have chorea until later in his progression and it wasn’t until then that his psychiatrist thought it would be smart to have him tested for Huntington’s disease (HD). This 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.

Meanwhile, not to the knowledge of her youngest son, he was symptomatic to the disease. It can be described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes forgetfulness, personality changes, and impaired judgement just to name a few.

“My youngest son on the other had delusions so severe he ran away to become homeless thinking the FBI was tracking him,” said Teri. “Besides severe psychiatric problems, he was becoming clumsy. He was 5150ed (threateningly unstable) several times by the police because they thought he was potentially harmful to himself and others. His diagnosis while in the psychiatric ER was usually bipolar and/or schizophrenia but he would never take any medications he was prescribed once he left the hospital.”

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Things would go from bad to worse.

Teri’s husband passed away from a heart attack and pneumonia. In that same week, she learned that her youngest son was killed by a hit and run driver a month before as he was unidentified at the county coroner.

HDSA Center of Excellence at University of California, San Diego would assist the county coroner to get blood samples to determine if he had HD. He would in fact test positive for the disease and it gave her family an explanation for his behaviors.

Her oldest son would then be tested and it came back positive. He would sign up for HD Enroll, a worldwide observational study for HD families.

“He will have advantages his father and brother did not have,” Teri explains. “First, he knows that he has HD way in advance of any symptoms. Second, he can try to be proactive. Third, his half-sister and I (his mother) know much more about what we’re dealing with and will recognize issues as they show up much sooner. Our whole family is very educated about HD and use social media to bring awareness of HD to as many people as possible.”

She plans on attending nearby support groups and talking with people online as she knows that her family is alone in this battle.

“With the current studies in the works, I feel there is hope where there was none before,” said Teri. “Having a positive diagnosis, I am encouraging my oldest son to live his life to the fullest, not waiting for tomorrow.”

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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 (HDSA) 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.