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By Matthew Santamaria (msantamaria@hdsa.org)

​At a young age, Shawna Wolfe knew that there was something different about her family.

Her grandfather was diagnosed with a gene that causes 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.

“We didn’t really know why or from what, we just knew he needed a lot of help,” Shawna explains. “He would sit in the living room and mostly observe while we had Christmas and birthday parties, sometimes yelling for our grandma over and over again.”

Her grandfather would later pass away peacefully in his sleep.

However, HD would not disappear from the family’s life. 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.

Shawna’s grandparents had seven children which included her mother. Five of the children passed away due to complications from HD. Shawna’s uncle was the first to show signs of the disease and passed away at forty-nine-years-old.

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

Her aunt Tina was the oldest of the siblings and also tested positive for HD. She would soon pass away at the age of fifty-nine years old after being in hospice care for only five days.

Shawna’s uncle Bruno was also positive but the disease progressed slowly for him as he wanted to stay independent. After his car got taken away from him, he would ride his bike around town.

“He rode to 7-11 to get treats whenever he could,” Shawna explains. “He would get brought home by the police frequently due to people calling and saying they were worried about him or thinking he was a drunk. The local police became very helpful and understanding of Huntington’s and showed compassion towards him, which isn’t always the case.”

There have been document cases of people with HD having difficult interactions with law enforcement because their symptoms are misidentified. The HDSA Law Enforcement Training Guide is provided to help law enforcement officials be more educated about HD and provide suggestions of how to address behaviors associated with HD.

For more information, click here

After years of battling the disease and being cared for, Bruno passed away with loved ones around him.

Her aunt Anna also tested positive and remained independent. She lived on her own until she passed away eight days before her sixtieth birthday.

“Whether this was a good thing or bad thing, there’s never any way to know,” said Shawna. “She sold her beautiful home in the mountains to live down closer to family, as she knew that she would need more help. She lived in a quiet townhome not too far from my grandma and one of her sons. Everyone would go check on her and she seemed to do very well on her own. She thrived, I think, because she was still so independent.”

Shawna’s mother also tested positive for HD. According to Shawna, her grandmother took Shawna’s mother to a doctor when she was younger because she was having behavioral issues but the doctor said that she would grow out of it and she never did.

“Mental issues seem to go hand in hand a lot of the time with this disease but not always,” said Shawna. “She did not want to be at home and was in denial of how bad her disease was. I cared for her every day and it still didn’t seem like enough. I wanted to take the pain away from her and let her brain rest so bad. It’s a very sad sight to watch someone you love, be so thoroughly tortured by their own brain.”

Two months after Shawna’s grandmother passed away, her mother passed away at the age of fifty-six-years-old.

“Everyone says that it’s better after they pass because they are in peace now,” Shawna explains. “While I fully understand what this means, I do wish that no one had to die just to be in peace. What a terrible disease that haunts so many for their whole lives, slowly taking away who they are. Slowly killing our family. When does this end?”

Shawna has eleven cousins at risk for the disease. Four out of the eleven cousins tested positive for HD. Shawna’s little brother tested positive for HD but Shawna tested negative.

“I desperately need to know there will be something to help him and my cousins,” Shawna explains. “We can’t keep losing our family.”

Shawna has a message for the HD Community:

“We walk every year to help raise money towards finding a cure. We advocate everywhere we can. We tell our story to our friends, neighbors, and strangers. We wear blue in honor of those that we love that have passed, and for those that are fighting. We are trying to find an answer to this awful disease. We have to. We must save the next generation from this. The more we talk about it, the more people know and the more people can support us.”

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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