The impact of a ruptured brain aneurysm extends well beyond the person experiencing the aneurysm. In an instant, a ruptured brain aneurysm can change lives forever. Thanks to medical technology advancements, many people today are successfully treated for a ruptured brain aneurysm. However, the reality is approximately 40 percent of those who experience a ruptured brain aneurysm do not survive. The Trinity Love Hoblit Foundation is working to raise awareness about the signs and symptoms of brain aneurysm and the importance of receiving immediate medical treatment to improve outcomes.
The Family History Risk Factor
While there are a number of risk factors for brain aneurysm – smoking, high blood pressure, age over 40, being a woman, alcohol or drug use, and traumatic brain injury – one risk factor not as well known is having a family history of brain aneurysm. One of the goals of the Trinity Love Hoblit Foundation is to make sure those with a family history of brain aneurysm understand the increased risk and the importance of screening. Board member Ajay K. Wakhloo, MD, PhD, chief of neuro-interventional radiology and a professor at Tufts University School of Medicine says, “Advocating for a screening program is an important preventive measure. In our community, we see familial incidence of brain aneurysms in approximately 15 percent of people.”
Justin Taylor’s Story
Justin Taylor of Yulee, Florida is someone whose life was forever altered when his mother passed away at the age of 36 from a ruptured brain aneurysm. He had never thought too much about the risk factors until September 2019 when he read an article about the Trinity Love Hoblit Foundation during National Brain Aneurysm Awareness Month. “I was scrolling through the Fernandina Observer when I came across the article. I was not aware that brain aneurysm can run in families,” says Justin. “I researched the foundation and realized I know several board members. I reached out to find out about getting involved.”
Justin was the child of a single mother who worked hard and meant well but suffered from alcoholism, leading them to on-and-off homelessness when he was between 10 and 12 years old. At the age of 12, Justin’s mother placed him in a group foster home in Jacksonville so she could enter a rehab facility. During this time, Justin had the opportunity to really get to know his mom for the first time. She was a nurturing mother working to overcome her own obstacles so that she could lead a better life for both of them. After nine months of sobriety, and just a few days from being officially reunited, his mother suffered a ruptured brain aneurysm. He was actually staying the night with her when he heard her yelling his name.
Justin says, “I ran into my mom’s room and saw her face down. She was unable to move and could barely speak. I quickly called 911. She had surgery to repair the aneurysm, but it was not successful, and she passed away three days later on May 26, 1996.” At the age of 13, Justin lost one of the only solid people in his life. This single event – a ruptured brain aneurysm – changed the course of his life. He continued living in the group foster home with 30 other children. And while surrounded by many people, he still felt very much alone. However, Justin to this day remembers his mother’s constant inspirational advice that if you work hard, keep your faith and never give up, you can do anything. Today, Justin is serving his fourth year as a Nassau County Commissioner and is running for another constitutional seat. He co-founded a statewide group of former foster youth who advocate for positive change in the system – this group has grown from 10 to more than 350 members.
Justin Gets Screened
Thanks to learning about brain aneurysm familial risk from the Trinity Love Hoblit Foundation, Justin realized he needed to know if he were at risk. Married and a father to a 9-year-old son, he had thought a lot about the fact that he is now around the same age as his mother when she passed away – and he could not imagine what his son would do without him. Fortunately, it is possible to be screened for brain aneurysm. He made an appointment with his primary care physician who referred him to a neurologist. Because of his family history, insurance approved a screening which consisted of a magnetic resonance angiogram (MRA). The good news for Justin is, at this time, he is clear. His doctors recommend he be screened every five years.
Florida House Bill 2897: Familial Screening for Brain Aneurysms
The Trinity Love Hoblit Foundation and Justin Taylor are both supporting Florida House Bill 2897, introduced November 13, 2019 by Rep. Wyman Duggan of Florida's 15th District. As of February 2020, the bill is in the Healthcare Appropriations Subcommittee. The Florida Familial Brain Aneurysm Project Family Members was filed by the principal investigators, Dr. Ricardo Hanel with Baptist Neurological Institute and Dr. Eric Peterson with the Neurological Surgery Department at the University of Miami School of Medicine. The objective is to identify the true prevalence of intracranial aneurysms among first-degree relatives of patients affected by this disease and to study their genetic and biomarker profiles statewide. Dr. Ricardo Hanel is a major partner of the Trinity Love Hoblit Foundation.
After getting together with Olivia, president of the foundation, and her husband, Phil, Justin saw their passion to help save lives and wanted to get involved. “Imagine a young child who just lost a parent – whose life has been changed forever. We can work toward prevention by better understanding the familial risk. We need more research and awareness about brain aneurysm to better save lives,” says Justin.
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