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By Matthew Santamaria (msantamaria@hdsa.org)

There is no important bond in this world then the one with your siblings. Hiren Patel had a great relationship with his brother Nilesh.

When Nilesh was younger, he was a very active. “He was a caring person who loved to spend time with his friends and family,” said Hiren. “He enjoyed watching Laker games and the latest Bollywood movies. He often dreamt of his favorite actress, Madhuri Dixit.”

However, as time would progress, there was a difference in behavior in Nilesh that started to worry his family. This is when they decided that he needed to get professional help.

After a period of four months, he would get tested for multiple conditions. In 2004, Nilesh was diagnosed with Huntington’s disease (HD). This 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.

Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. “This was something we’d never heard of as we had no history of HD in the family,” Hiren explains. “From that day, we knew life would change for us all.”

The symptoms would then progress and it would be physically and emotionally challenging for Nilesh. It can be described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. The symptoms include personality changes, mood swings, forgetfulness, impaired judgement, involuntary movements, slurred speech, difficulty swallowing, and weight loss.

“He remained true to his character - strong, optimistic and always concerned for the well-being of his family,” said Hiren. “His favorite phrase became Mind Over Matter.”

Nilesh would then lose the ability to drive. His father and uncle would then drive him from Bakersfield to Santa Monica twice a week so he could finish college at The Art Institute of California. He would graduate with a Bachelors in Graphic Design.

However, the disease progressed over time as the symptoms of the disease would take over his life.

“Nilesh’s writing became illegible; slowly went from a slight change in gait to not being able to walk at all; not being able to sit up straight; concentrate and keep his mind focused; lost ability to perform daily functions; speak and eat.”

In 2012, on August 29th, Nilesh lost his battle with the disease. A year before he passed away, Hiren joined HDSA’s Los Angeles Chapter after meeting the Walk Chairperson at an HDSA educational event. He wanted to give back to the community and to show others that they are not alone in this devastating battle.

Hiren is currently the Vice President of the Chapter. “Over the past 8 years, I have sat on the Team Hope Walk committee as well as co-chairing the 2018 and 2019 LA walks,” said Hiren. “I have also volunteered my time for other local and regional events whether on the organizing committee or lending my services in creating marketing materials."

Hiren did not forget his Nilesh’s love for basketball. He helped organize an annual basketball tournament in honor of him to raise awareness and money for HDSA. For more information about the tournament, click here.

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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