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By Matthew Santamaria (msantamaria@hdsa.org)

Life can have its ups and downs. For Jenette Anderson, she has had plenty of ups and downs in her life.

In the summer between kindergarten and first grade, her parents got divorced. Her mother moved to Denver, Colorado with Jenette’s older brother Bob and her older sister Christy. Jenette and her younger sister Carri stayed in Rifle, Colorado with her father.

For the next few years, Jenette rarely saw her mother or her older siblings. However, her mother was becoming increasingly violent which led the siblings to run away. Soon enough, Jenette’s father gained custody of all four children and her mother gained visitation rights.

“Every weekend two us kids would get on a Trailways Bus and take a seven hour bus ride to Denver,” said Jenette. “We would then call her when we got there to have her and her new husband come pick us up. Amazing that we did this at such a young age with no adult supervision!”

The violence was just the beginning as her mother’s behavior was getting progressively worse. She would then divorce from her second husband and was left on her own. She was developing symptoms from 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 all began noticing that my mom had a horrible temper, would run into walls, fall down a lot, and on occasion have terrible hallucinations that were very violent,” Jenette explains. “It was very scary as a young girl. None of us knew what was happening to her. Evidently her father had killed himself by placing himself in his vehicle on a train track. He was never diagnosed with HD. My mother's older sister had killed herself too, from what I remember being told, before she was ever diagnosed with HD.”

The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Jenette’s mother behavior co-existed with the symptoms of HD including mood swings, depression, impaired judgement, involuntary movements, difficulty in swallowing, and weight loss.

“She was unable to drive or work and would have neighbors and friends, whom I didn't know, help her with groceries, etc.”

By the time Jenette was in sixth grade, her father and uncle decided to put her mother into a nursing home as she no longer could take care of herself. Her mother lived in the home for a few years until she was put into a Denver hospital. Her father took the family to Denver for the weekend where a doctor officially diagnosed her mother with HD and explained the disease to the family.

Jenette, Bob, Christy, and Carri would learn that this disease affected their future. 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.

“He explained it would be wise for us to not have children and that hopefully there would be a cure for the disease by the time we got to that age,” said Jenette. “I was fifteen years old at that time. That was all the information given to us. No support group, no doctors to go see, no counseling. Here is a life altering disease, good luck.”

She continues:

“This diagnosis changed the way I existed! We were given nothing but that little bit of information on the disease and sent on our way. The course of all of our lives changed that day. It forced me to run from Colorado in hopes that I could get away from all the places that reminded me that I could get this disease. I moved and tried to get on with my life like everyone else my age, but it didn't come easy.”

Jenette tried to move on with her life and was starting to see more positives. At the age of twenty-five years old, she married the man of her dreams. He was willing to accept that HD might be her fate and he still wanted to marry her. They both did not want to have kids.

When Jenette got married, her brother Bob showed up to the wedding. She had not seen him in more than seven years but noticed something to similar to see. Bob was diagnosed with HD as a neurologist confirmed the diagnosis.

“I was so happy to see him, but it brought me to tears the whole time he was with us and I couldn't shake the sadness and fear that came with seeing him,” said Jenette. “It put me into a depressed state of being.”

Her brother would soon pass away at the age of thirty-nine years old due to pneumonia that was stemmed from HD and AIDS complications. The family did not know he was suffering from AIDS until blood work came back after he passed away.

“It was now starting in my siblings,” said Jenette. “I was frightened and had no resources to help. If I did have resources, I still may not have reached out. I was so scared to face this disease. I just wanted to ignore it all. I felt healthy, so I did just that. Ignore all...including phone calls from my mom! This was the early 1990’s and we didn't have internet yet, so I just kept going on as best as I could.”

Her older sister Christy wanted to genetically test for the disease. This is a very difficult choice for at-risk patients. There are some people that see no benefit in knowing while others feel knowing can help them make informed choices about their future. This decision is personal and there is never a right or wrong answer.

She tested positive. Because of this, Christy tried to take her own life but was unsuccessful. She was only twenty-six years old at the time. By the time she was thirty-nine years old, she was put into a facility and that she still remains in Montrose, Colorado. Christy is now fifty-three years old.

“I wish I had asked her more questions, but we didn't have a close relationship and I didn't even know what questions to ask her,” Jenette explains. “Her journey has been the hardest and the longest of all my siblings or mother.”

The toughest diagnosis for Jenette to handle was Carri.

“Her and I were only fifteen months apart in age and had shared so much of our childhood together,” Jenette explains. “We had a lot of the same friends and had been in many athletic programs together. She was a young mother of three beautiful young boys.”

According to Jenette, she noticed symptoms in Carri when she was between nineteen and twenty years old. She wasn’t sure if symptoms progress at that age so she ignored it. However, the symptoms can progress at a young age. This is called Juvenile Onset Huntington’s disease (JHD) that affects children and teenagers progressively.

Once she had her second child, Carri discussed with Jenette that she might have this disease as well.

“It was the hardest thing to watch her go through and not feel supported by our town, old friends, acquaintances, etc,” Jenette explains. “No one in town knew what HD was and therefore judged, ridiculed and stayed clear of her. Even the social workers stepped in and tried to help my sister and nephews. I even had a friend once tell me they thought she was drunk all the time. It broke my heart for her, my father, and her children.”

Soon enough, Carri was placed into a nursing home because Jenette’s father had too much responsibility of taking care of Carri’s children and Carri. “It broke my heart to listen to him cry and babble on about how bad he felt putting her in there. He had to do it. He was so supportive of her and took the best care possible for her as long as he could.”

At the age of forty-one years old, Carri passed away. Jenette’s father had been through enough heartbreak in his life.

“I can only imagine how hard it had been on him, watching his children being taken from this disease,” Jenette explains. “My dad went downhill fast after her passing. He just couldn't take the heartache. He was in and out of the hospital just after her funeral. He died three years later.”

Jenette continues to live her life as normally as she possibly can. When she was twenty-eight years old, she was noticing that she was still not showing any signs of HD. Jenette then asked her family physician to do neurological checks on her yearly visits to see if the physician noticed any signs.

She was still in the clear. Because of this, Jenette decided that she now wanted to have children and her husband supported her decision.

“Since all my siblings had shown signs in their early twenties, I felt comfortable that I did not have HD. I have not regretted my decision for one moment. We have two beautiful young sons, one that is twenty-two years of age and one almost twenty-one years of age. I am still symptom free.”

Jenette wants to educate others about her HD journey and know that they are not alone in this fight. She started a blog called Soul-Survivor. To read the blog, click here.

“I have struggled for many years with all of my siblings having Huntington's and I was the fortunate one,” Jenette explains. “I do have regrets with how I dealt with all of my family and have had to work hard to keep myself from becoming depressed about losing all of them. Because I have surrounded myself with such amazing friends that have helped guide me to feel comfortable talking about them and the disease, I started a blog.”

Jenette expresses hope for the HD Community.

“With internet and resources available today, there is so much more support and help available to those who are at risk. I know there is positive information about HD, trials and testing being done now. This is an exciting time for hope.”

She continues:

“I will continue to grow and learn about this disease and look forward to being an active member of the Huntington's Disease Society of America. I feel I am now ready to reach out and help this organization that does so much for the families that are struggling with Huntington's. There are positive things on the horizon and I look forward to seeing the changes and meeting new people through HDSA.”

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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.