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By Matthew Santamaria (msantamaria@hdsa.org

For more than 25 years, New York City resident Lauren Lynch was a teacher. However, she is now battling Huntington’s disease (HD), 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.

“Even with all the challenges that HD has brought to my life it's not changing whom I am at my core,” said Lauren.

According to Lauren, her mother dealt with the mental aspects of HD and was diagnosed at 40-years-old. 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.

“I'm fortunate that my mother's battle with HD made me understand struggle, illness, and have a vast amount of empathy for mental illness,” Lauren explains.”

Lauren describes her father as a successful diplomat, but an alcoholic and her mother dealt with depression. Throughout her childhood, her grandmother was the most consistent presence in her life.

“My parents left me no consistently and basically felt as if I was often the adult in our household,” said Lauren. “My grandmother and I were extremely close, and it was only with her I felt loved and protected.”

According to Lauren, her grandmother had an affair and almost had an abortion. However, she decided to keep her child, Lauren’s mother.

“I believe that the deepest secrets of our live can unshed can lead us to change into someone much better if we share,” said Lauren. “I've never been upset that my grandmother chose to have my mom. Her courage, faith, and love help me on my darkest days.”

For several years, Lauren attended support group meetings before making the decision to be tested for HD.

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.

Lauren tested positive for HD.

The one consistent message that Lauren believes is having HD is not a horrible fate.
 

Lauren has found an outlet via social media support groups. The advice that she gives the people with HD include staying active, find a support group in person or online, yoga, massage balls, keeping a journal, dance, listening to music, travel, hold on to simple pleasures, and eat your favorite food just to name a few.

In her HD battle, Lauren has lost significant people. According to Lauren, she wished that people close to her did not take things personally as loud noises could be triggers. She believes if one is upset, then walk away, be happy, and create positive memories.
 
Lauren has a message for the HD Community:

“HD is a struggle every day but I think if we can somehow change our paradigm it doesn't have to be as horrible as we make it.” 

 

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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