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By Matthew Santamaria (msantamaria@hdsa.org)

Two years ago, Michigan resident Hilary Brown did not know what Huntington’s disease (HD) was … now she does.

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.

Originally from New Hampshire, Hilary went to high school and her best friend was pointing out that her mother looked drunk all the time. Due to religious beliefs, her mother did not go to the doctor or take medication - her family thought it was Parkinson’s disease.

HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, unsteady gait, involuntary movement, slurred speech, difficulty in swallowing, and significant weight loss.

Her mother’s main symptoms included slurred speech and involuntary movements. Fifteen years later, her mother was told that she was diagnosed with the gene that causes HD. Hilary received a phone call about this and was immediately scared.

She met with a friend who was a cancer research scientist. They would both learn more about Huntington’s disease.

HD was a disease she, her half-brother, and older sister had to worry about for themselves as well. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.

For Hilary, this would be another disease that she can possibly have as she has an autoimmune disease in her esophagus. She currently manages the symptoms with steroids.

Hilary currently keeps up with HD research and updates on new trials in the HD Community because of her own health problems and how she can offset the symptoms.

Hilary has started a Keto diet. She follows the Plant Paradox Keto protocol that limits animal protein and encourages plant-based fats. After starting the diet, she has noticed that her mood and coordination level has been significantly better as well as her concentration which helped her mindset with HD.

She has decided not to get tested yet but wants to learn more about managing HD symptoms.

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.

Currently, her sister is not worried about the disease, but her brother is worried about possibly inheriting it. Hilary goes to support group meetings with her mother and find the meetings helpful. According to Hilary, she did not know anybody with this disease and the meetings have helped her show that nobody is alone in this battle.

She considers her mother a champion as she always has a positive outlook on life. Her mother wants to enjoy every aspect of life. When Hilary went to Italy, her mother went along. Even with her symptoms, she walked all around Italy and amazed her daughter.

Hilary has a message for the HD Community:

“HD is how you want to deal with it. This is something that will connect you forever and I recommend that you make peace with it.”

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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