Matthew Santamaria ([email protected])
Three years ago, Eva Angelina Romero was not a part of the Huntington’s disease (HD) community. In fact, she didn’t know what HD was.
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.
For years, she thought her grandmother was suffering with Parkinson’s disease, but Eva would learn as an adult that her grandmother had HD.
“She came to this country early on as a teenager from Mexico,” Eva explains. “My mother did not understand much about the disease since in her generations past as it was very misunderstood and was never heard of.”
Eva tried to explain to her mother the importance of being tested for the disease. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease.
“Although I explained to her my concerns, she didn’t see the need to get tested,” Eva explains. “I knew her decision was much affected by our culture. By learning much more about Huntington disease and knowing my possible fate, I spoke to my doctor and I opted to get tested.”
There is good news and bad news. Good news is that Eva tested negative for the disease. Bad news is her sisters were not lucky as her mother was experiencing symptoms as well.
The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. This includes personality changes, mood swings, depression, forgetfulness, impaired judgement, forgetfulness, involuntary movements, slurred speech, difficulty swallowing, and weight loss.
“Some of opted to be public and some have not, but they are also impacted,” said Eva. “I still get to experience the horror of such disease through my mother’s decline daily.”
Eva would soon see the decline of health in her sister and how it impacted the family.
“When I saw how she had progressed, it left me distraught,” said Eva. “HD became even more real. And as much as I try to avoid it was very much visible everywhere I turned. The person I once knew was starting to change slowly before my eyes as with my mother.”
Eva tried to avoid HD, but then understood that it is a family journey as she started to become more educated about it. She wanted to raise awareness as others needed to know about this fatal disease.
“I attended my first HDSA convention with my sisters in 2018 and it was truly inspirational,” Eva explains. “It also changed some of my perspective. I now want to bring more awareness to those who do not understand or know about HD.”
She has expressed what she has emotionally went through by blogging. This has allowed her to connect with other people about their HD experience and it showed her that she is not alone in this battle.
“I journal my mom’s struggles and some of her triumphs,” said Eva. “Although HD has been a difficult journey, I have grown as a person and I have learned to become more compassionate and patient.”
To read her blogs, click here.
Currently, her mother can no longer drive or work. She has someone assist in taking care of her mother two-three times a week.
“Not once did I ever think I would be helping care for my mother at only fifty-nine-years-old,” said Eva. “Knowing that my sisters might have the same fate something that I think about often. But I do have hope. I hope for a cure someday.”
Last year, Eva decided to become a voice within the HD Community. In 2020, she was named the new chapter president for HDSA’s Tennessee Chapter.
“I desire to bring awareness within the Hispanic Community,” Eva explains. “Being that I have also learned there’s very little knowledge about the disease within that community.”
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. Every 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 41,000 symptomatic Americans and 200,000 at-risk of inheriting the disease. In less than 10% of cases, juvenile Huntington’s disease (JHD) affects children & adolescents. JHD usually has a more rapid progression rate than adult onset HD; the earlier the onset, the faster JHD progresses. HD is described as having ALS, Parkinson’s and Alzheimer’s diseases – simultaneously. HD is characterized by a triad of symptoms, including progressive motor dysfunction, behavioral disturbance and cognitive decline.
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 [email protected]
“The person I once knew was starting to change slowly before my eyes as with my mother.”