FOX NY: Advocate fights for new Huntington’s disease legislation in mother’s memory
MaryAnn Emerick was only a teenager when her mother began exhibiting symptoms of Huntington’s disease (HD), a debilitating neurological condition that impacts nearly 30,000 Americans.
HD is an inherited brain disorder that results in the progressive loss of mental faculties and physical control. Symptoms typically appear between the ages of 30 and 50, and worsen over a 10- to 25-year period.
“It’s sort of like a mixture of ALS [Amyotrophic lateral sclerosis], MS [Multiple sclerosis], Alzheimer’s and Parkinson’s all wrapped up into one crazy disease,” Emerick told FoxNews.com.
Children of individuals with HD have a 50 percent chance of inheriting the fatal HD gene. While there may be a correlation between the number of times the CAG codon in the DNA repeats itself in the HD gene, it is impossible to predict when the disease will manifest. The CAG codon is the DNA code that is repeated 40 or more times along part of the Huntington gene in people who have Huntington's disease.
According to the Huntington’s Disease Society of America, the higher the CAG repeat, the more likely HD will strike at a younger age.
More than 250,000 people are at risk of developing the disease.
When doctors originally diagnosed Emerick’s mother, they suspected depression, post-traumatic stress disorder and even biplar disorder. But the disease, which struck her in her late 20s, turned out to be exactly what took her father’s and sister’s lives years before.
HD ate away at Emerick’s mother’s body and her mind, and about three years ago, it took her life as well.
While Emerick recently decided to get tested for the disease herself— a process which requires genetic, psychological and neurological evaluations before a blood test— she’s also taking the cause to Capitol Hill.
Emerick is now fighting for the passage of the Huntington’s Disease Parity Act, which would waive the 24-month Medicare wait for people with the disease and provide more access to Social Security Disability benefits.
Many HD patients suffer from debilitating cognitive and behavioral effects at least a decade before physical symptoms appear. These impediments often lead to loss of employment and employer-provided benefits.
The disease caused Emerick’s mother to lose her job, leaving their family homeless for a short time until Emerick and her sister moved in with family.
Emerick became inspired to help other families like her own after attending the HDSA National Convention in Lousiville, Kentucky earlier this year.
“There were a lot of families there … that don’t have the support that I was lucky enough to have,” Emerick said. “They’re just tired of fighting, so I felt like I needed to begin my journey and fight for them and for myself and for my family.”
In the 112th Congress, 158 Members of Congress in the House and Senate cosponsored the Huntington's Disease Parity Act. The legislation was reintroduced in the House as H.R. 1015 and in the Senate as S. 723.