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By Matthew Santamaria (msantamaria@hdsa.org)

As a nurse, Indiana native Carie Warner has seen a lot in her life but now she is on the other side and is in the fight of her life against 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.

Fifteen years ago, her father was diagnosed with the gene that causes HD after developing minor symptoms including three falls which led him to go to a doctor then a neurologist. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

“He knew nothing of his biological father’s family history,” Carie explains. “After the positive news came back, we were in total shock. This news hit everyone so hard. It’s been an adjustment for everyone. Being a nurse, I knew what laid ahead for my dad.”

Carie’s father was a minister for many years and went back to college to receive his doctorate degree. Five years later, he had to give up driving and work due to the progression of HD.

“He went through some hard times,” said Carie. “He was a very active person. He was always jogging, riding his bicycle and working out. Three years ago, he told someone that his dream was to be in a marathon. Some people he knew got together and took part in the marathon. They pushed him in a special chair. It was amazing to see so many people get together to make my dad’s dream a reality.”

For the past two years, her father resides in a memory care center.

As for Carie, she knew what was ahead for her and her sister. 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.

Carie and her sister agreed to not get tested. However, in March of this year, she changed her mind because she thought about her two sons and one daughter.

“I had struggled with that decision for so long,” said Carie. “I was getting tired of the unknown and I also felt an obligation to be tested for my kids. They are getting older and could be having children of their own. One part of me felt, if I get tested and I am negative then everything is great. However, the other part was afraid if I did carry the gene then my children would have to deal with the emotional part of that. I didn’t want them to go through what I have been going through.”

Carie would get tested in March. The decision to get genetically tested is difficult. 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.

“Waiting the three weeks was brutal,” Carie explains. “Worry and fear just grips you. I went to get my test results with my husband and Mom for support. Sitting there and waiting on the doctor, I was reading the 91 Psalms from the Bible. Trying to find comfort and prepare myself for the news.”

Nothing would prepare her for when the doctor came in. She tested positive for HD.

“I was in shock,” Carie explains. “I am not symptomatic but I almost expected that result. I kept myself together while I was there. When I got in my car to drive home, that is when the tears flowed. I don’t think I have cried so hard in my life.”

It has been several months since she tested positive as she has dealt with depression and anxiety. For Carie, it has been hard but her main concern is her children.

“I am still trying to take it one day at a time,” Carie explains. “I still have days that I am fearful but at least I know now. I can live life to the fullest and not take my life for granted. The hardest was telling my children. Wondering how they were going to handle it. They seemed to take it ok. I know they are all dealing with it in their own way. I am hopeful with the new clinical trials that my children may have a cure in their lifetime.”

In Carie’s situation, she knows that she is not alone in this battle. Since her father’s diagnosis, she has been very active in the HD Community. Her son Jake put on two musical concerts in high school which raised money for HDSA.

According to Carie, it was a great experience obtaining signatures for the HD Parity Act. This was recently re-introduced to Congress. If passed, then this will allow HD patients not to wait two years for Medicare benefits as they can receive it once they qualify for disability.

“I am sharing my experience to begin my healing and spread awareness. I hope by telling my story that the people who are affected by Huntington’s doesn’t feel alone.”

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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