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By Matthew Santamaria (msantamaria@hdsa.org)

When you find the one in your life, you hold on to that love forever. Susan McGann was only twenty-years-old when she met the love of her life.

“It was love at first sight,” said Susan. “We married four years later.”

Susan was born in Newport, Rhode Island but has lived more than forty years of her life in Colchester, Connecticut. Seven years after the birth of their first child, Susan started to know a difference in her mother-in-law when she would come to help out.

“We saw that she was unsteady on her feet and had trouble trying to hold our infant,” said Susan. “Not long after that she was taken to a facility to be assessed but no medical professional had any idea what she was suffering from.”

Susan’s mother-in-law was previously taking care of her own husband, who would pass away from prostate cancer. She would then go through her own battle as she was diagnosed with the gene that causes 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 usually during their prime working years and has no cure.

The changes that Susan saw in her mother-in-law were symptoms of HD. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. It includes personality changes, mood swings, depression, forgetfulness, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

“Apparently, her father had it but died in his fifties of something else,” Susan explains. “She had seven other siblings and her youngest sister had passed in her forties of the disease but no one talked about it being HD. We never talked about it or how it could affect our family as it being a genetic disease.”

This would then send a ripple effect in the family. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Her husband’s uncle and cousins were then diagnosed. His oldest sister started to develop symptoms and would pass away at the age of sixty-three-years-old after more than ten years in a long-term facility.

Around this time, her daughter contacted Virginia Goolkasian, HDSA’s New England Regional Development Director. She offered Susan to volunteer at assisting organizing events for HDSA. During this time period, Connecticut was not a chapter/affiliate with HDSA. There was only a HD support group at the local health center.

“I met many wonderful HD families and started reaching out to help with events and raising awareness,” said Susan.

Susan would assist HDSA with growing the presence in Connecticut which included facilitating five new events in eight months. She would then be offered the volunteer chair of HDSA’s Connecticut Affiliate. This year, she became the President of the now HDSA’s Connecticut Chapter.

“It took thirteen years of persistence, networking and a lot of volunteer hours to come to this point,” said Susan. “I didn’t do it on my own and thank all of the volunteers who have worked alongside me to make the dream a reality.”

As for Susan’s family, her husband has followed in his mother’s footsteps. In 2008, in his late fifties, he tested positive for the gene that causes HD.

“We were somewhat shocked to find out he did,” Susan explains. “Even though I had been working in the HD community and meeting many HD families it is different when your at-risk loved one then becomes the person with HD. It changed my perception of things and made me even more passionate to help in whatever way possible.”

Her children have decided not to be tested. 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.

“It is their decision and we support them in whatever they decide,” said Susan. “If they do test positive our hope is that they will have more options to eradicate the disease before becoming symptomatic.”

Susan’s husband is now sixty-seven-years-old and is still in the early stages of the disease. According to Susan, his memory is still better than hers.

“This fact motivates me even more to help others in our Connecticut HD community who have loved ones who need more resources and care than we do,” Susan explains. “That is why raising awareness is so important.”

No matter what happens in life, she will never leave her husband’s side.

“I think he so brave and he is an inspiration for me and for other HD patients who meet him,” Susan explains. “He never complains and tries very hard not to let his symptoms define who he is or what he is able to do. I am very lucky to have him as my life partner.”

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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