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By Matthew Santamaria (msantamaria@hdsa.org)

NOTE: The following story discusses the topic of suicide. If you are feeling suicidal or have suicidal thoughts, visit the National Suicide Prevention Lifeline or call 1-800-273-8255.

When she was growing up, Tennessee resident Melissa Barnes did not have it easy. Due to her struggles with depression, she would have to go on anti-depressant medication and she also had the chance of inheriting 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 during their prime working years and has no cure.

When she was 9-years-old, her great-grandmother had trouble walking. She didn’t think much of it because she thought that was normal for an older person to need assistance with walking. Her grandmother was a nurse focused on labor delivery. Then, she started to develop mood swings and later lost her job.

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.

For a while, her grandmother thought she had Alzheimer’s disease, which destroys memory and other important mental functions. She started to forget food was in the oven and not throw things away which later she became a hoarder. However, she did try to manage her mood swings by learning to stay calm. She was diagnosed with the gene that causes HD in a nursing home after breaking her hip.

Melissa’s mother did not want to be tested and tried to move on with her life. Every child of a parent with HD has a 50/50 chance of inheriting the faulty gene.

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.

Melissa is one of three siblings. She had a little sister that may have had HD symptoms. In 2000, she took her own life. Her half-brother is at risk as well.


With Melissa’s tough childhood, she was married at 17-years-old and had three children by the time she was 21-years-old. Now, she had her own family to worry about as she would have three more children. She home schooled her children for more than thirteen years.

For Melissa, she started a similar pattern as her family members did with HD. She started to have memory loss and couldn’t handle multiple things at once. In 2004, she started to do my research about HD and wanted to be tested. At 34-years-old, she tested positive for HD.

Melissa suffered more personality changes and was later sent to a mental hospital. She would have an eventful experience at that hospital. 

"The doctor told me just because I had HD it didn't mean I would ever get symptoms," said Melissa. "Then, I was put on heavy medication which caused me to hallucinate. The doctor told my husband that I was faking the hallucinations so I could stay in the hospital longer. My husband went home and told my children which started the process of my kids to be alienated from me."

According to Melissa, this caused an even more divide in the family as her husband later moved on with someone else.
 
Melissa has now tried to create a positive mindset for herself. She has her children in her life and will not let HD control her life.

Melissa has a message for the HD Community:

“Don’t be afraid to get tested. I hate to see people suffer with just wondering.” 

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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