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By Matthew Santamaria (msantamaria@hdsa.org)

Robert Campbell did not have the typical family life. He was born on April 23rd, 1960 in Salt Lake City, Utah. Robert’s father was previously married and had two daughters who lived in Denver. In total, Robert has three blood brothers, two half-brothers on his mother’s side, and two half-sisters on his father’s side.

He does not know his uncles and aunts. His father was the youngest of seven and they would soon split up after the death of his parents in a fatal car accident. Four of his aunts were put into mental institutions. At the age of forty-seven, his father passed away in a car accident as well.

His mother raised Robert until he left home at the age of sixteen years old. Robert would then work many jobs which includes cook, bricklayer, and highway construction. At the age of nineteen years old, his life would soon change as he joined the United States Navy.

In 1982, he met the love of his life Brigitte in Hawaii. “My French-Canadian girl and I got married on the base in Jacksonville, Florida on October 12, 1985,” said Robert. “We waited until 1992 to start a family, complication made it that I was unable to have children.”

Robert served more than twenty-one years in the Navy. Once he was out, he worked several jobs which included installing garage doors. He would then spend eleven years working for the American System, a military contractor on the base in Norfolk, Virginia. Robert’s position was Supervisor for the military call center.

Robert made it on his own in life, met the girl of his dreams, and had a great job. Life was going right for him. However, he started to have consistent toxic angry outburst. Brigitte could not take it anymore so she gave him an ultimatum: “Go see a Psychologist and a Neurologist or I am leaving you.”

It didn’t take him long to get himself checked out.

In April of 2012, Robert Campbell was diagnosed with 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.

Robert was not the only one in his large family to have the disease. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. His half-sister Marilyn passed away from the disease in 2001. They are the only known family members that have been diagnosed with the disease.

“Now when I look back at my naval career, it all make sense that HD was the cause of many of my injuries I experienced,” Robert explains.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Angry outburst is just one of the symptoms of the disease. Others include involuntary movements, memory loss, difficulty multi-tasking, and these are just one of the few. To learn more, click here.

“The benefit of not knowing you have HD eliminates all anxiety affiliated to the disease,” said Robert. “However, the benefits of knowing you have HD saved my marriage. I was able to get the right medications and plan my life accordingly.”

Since then, they became involved with HDSA’s Mid-Atlantic Region. She has been involved with five Team Hope Walks in Virginia Beach and attended two HDSA Conventions. “I participated on HD panels for future doctors at Duke, Eastern Virginia Medical School and the University of Virginia,” Robert explains. “We travelled to Durham NC, to participate in a four year clinical drug trial at Duke University.”

Robert has seen the symptoms of the disease change his life. “I used to run marathons, now my gait is so small I have a hard time walking up and down my street and my balance is weakening,” said Robert. “My pronunciation is hard to understand, my memories and hearing are fading. I cannot smile anymore, and empathy is taking all my emotions away. Driving a car that I love so much is now a memory.”

Without Brigitte, Robert does not know where he would be in life. He credits her for accommodating to him as she is strong and there love is forever. Robert is going to stay strong and do everything he can to find a cure. “Everybody with HD is different, you have to accept otherwise you will not only make yourself miserable but everyone around you.”

He continues:

“Never despair, live one day at a time, be an avid spokesperson about Huntington disease, get involved and educate yourself, and participate in all clinical trials. The cure is right around the corner, we must eliminate HD from the world, no more HD, as Pope Francis so well endorsed, be the most positive person possible.”

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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