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By Matthew Santamaria (msantamaria@hdsa.org)

Oregon resident Leslie Fuentes is determined to make a difference in the Huntington’s disease (HD) community.

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 during their prime working years and has no cure.

Leslie is not at risk for HD, but was personally affected by the disease. Several years ago, Leslie read an article about a childhood friend’s brother. He went missing and was found in front of his childhood home… where he was arrested. 

There have been documented cases of people with HD having difficult interactions with law enforcement because their symptoms are misidentified, misunderstood, or mishandled. To read more, click here 

Before learning about the brother, Leslie did not anything about the disease or the symptoms. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. 

Symptoms include personality changes, mood swings, depression, forgetfulness, impaired judgement, unsteady gait, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss. 

Recently, Leslie reconnected with her friend and their family. She would soon learn more about the disease and how it impacts a person and their entire family.  

Leslie owns her own salon and where her friend is also a customer. While there, Leslie would notice the HD symptoms firsthand. When her friend was younger, according to Leslie, she had beautiful blonde hair, but now looked like it wasn’t taking care of for a while. Other symptoms Leslie noticed included slur words and involuntary movement with the arms. 

However, Leslie did not want to bring this to her attention but was genuinely concerned for her. On that day, she said that you will not go through this fight alone. 

Since then, Leslie has joined HD support groups online as well as learn more about HD. She is the event coordinator for the 2021 Portland Team Hope Walk in September and wants more people in the area to know about HD. 
 
Leslie has a message for the HD Community: 

“We need to bring more awareness to HD and help give those affected the resources that is needed.” 

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Huntington’s disease (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 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. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD 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.  

HDSA was founded in 1967 by Marjorie Guthrie, the wife of legendary folk singer Woody Guthrie. Woody died from HD complications when he was only 55 years old, but the Guthrie family legacy lives on at HDSA to this day. 

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