Huntington's disease

Meghan’s Story

Meghan Sullivan is 22 years old.

When Meghan was 2, her father was diagnosed with Huntington’s disease. She didn’t understand it at the time, but by the age of 6, she knew that she had a 50/50 chance of having the disease herself.

In the summer of 2006, when Meghan was a sophomore in college, she came home one afternoon and started to pour herself some lemonade. She clumsily spilled the pitcher and knocked her glass to the floor. Her mother came in and began to help her clean up the mess. Meghan looked at her mother and said, “I think that I have Huntington’s.”

“I know,” said her mother. Cheryl had been noticing the symptoms in her daughter for a few years.

Meghan visited a neurologist and was officially diagnosed at the age of 19. The average age of onset for HD is 40.

Initially angry with everyone, Meghan thought about quitting school. Realizing that she was only four classes away from graduating, she finished college, earning an associate degree. Meghan’s father died in September of 2008, proud of his daughter but never knowing about her diagnosis.

Her neurologist recommended an experimental drug that she would be a perfect candidate for. She started taking it in December of 2008. The monthly cost of the medication is $6,000. The specialty pharmacy that Cheryl used for Meghan’s medications suggested that she contact Caring Voice Coalition. Cheryl said, “It was like winning the lottery. They are truly invested.”

Meghan, now a college graduate, lives at home where Cheryl can help to manage her daily routine. Meghan hasn’t given up, though. She is fighting to stay an advocate for Huntington’s disease and wants to see better treatments and a cure. She has organized a charity concert, “The Concert to Fight Huntington’s Disease, Concert for Meghan. With a Little Help From My Friends.” It will be held Saturday, May 12 at the Chelmsford High School Performing Arts Center in Chelmsford, Mass. Performing that evening is Peppertown, the most spot-on Beatles tribute band you’ve ever heard.

We hope that you’ll find yourself in New England in May and be able to join Meghan and her friends. We hope that you’re moved by her story and that you will also become an advocate for HD.

We also hope that you’ll take Meghan’s advice: “Live your life like me:  Every day to your fullest.”

Update: Meghan Sullivan passed away on May 12, 2014, at age 26. Read more about her life in The Chelmsford Independent.

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