November is National Alzheimer’s Awareness Month. According to the Alzheimer's Association, Alzheimer’s disease affects more than 5 million people in the U.S., and up to five percent of those have early-onset Alzheimer’s.
In the first of a series of reports, we’ll take a closer look at early-onset Alzheimer’s and we’ll meet a local man, who’s trying to raise awareness by sharing his own story of life with the disease.
“Most people who have Alzheimer’s disease, about 95 percent, have what’s known as late-onset Alzheimer’s disease,” said Dr. Rodney Guttmann, director of the University of West Florida Center on Aging, explaining that those are people who are generally diagnosed after age 65. “Early-onset is diagnosed before age 65.”
Typically, it strikes people in their 40’s and 50’s, but it can affect people who are even younger. In the U.S., it’s estimated that approximately 200,000 people have early onset.
Dr. Guttmann says most cases of early onset are due to genetic mutations in one of three identified genes, resulting in a type known as familial Alzheimer’s disease. More information is available on the National Institutes of Health (NIH) website.
This is where Brian LeBlanc comes in. LeBlanc is a Pensacola resident. Now 55 years old, he was diagnosed with early-onset Alzheimer’s last year. And he, too, is working as an advocate on behalf of the Alzheimer’s Association.
After hearing LeBlanc’s story, Guttmann was anxious to team up to talk about Alzheimer’s disease and make the public aware of what Alzheimer’s is and why it’s important to tackle the issue. “Not just because of the growing population of older adults that is driving a lot of what we see with Alzheimer’s disease, but raising awareness of these other forms of dementia such as early-onset Alzheimer’s disease that we need to get a hold of,” said Guttmann.
After his diagnosis in October 2015, LeBlanc immediately jumped into action. “I took to social media because I am a social media geek,” said LeBlanc. “But, I figured that was the best way to get people aware.”
LeBlanc says his social media presence got the attention of a member of the local Alzheimer’s Association executive committee, who recruited him to join their advocacy effort. That affiliation has led to an appointment to the 2015 National Early-Stage Advisory Committee. He’s also on the leadership board of Dementia Action Alliance.
Now, LeBlanc is on the stump as often as possible. “I just go around making people aware,” he said. “I tell my story, and it doesn’t matter whether it’s a group of 50 or 500 or one.”
LeBlanc says he speaks very openly about his disease in hopes that it will help others. “If at least one person goes to their doctor to get checked because they themselves may be experiencing some of these signs, then I’m doing what I’m supposed to do.”
In telling his own story, LeBlanc is also telling his family’s history with Alzheimer’s beginning with his maternal grandfather, who passed away in 1985. From there, he was able to determine that his grandfather’s mother also had Alzheimer’s.
“My great-grandmother had seven children and one of my grandfather’s sisters, she had 10 children. One was stillborn, but the other 9, every single one had early onset Alzheimer’s disease.”
More closely, LeBlanc’s mother, who passed away in January 2015, also had Alzheimer’s. His father had vascular dementia. That means his genetics played a major role in him developing the disease.
“Brian is unlucky to the extent that his mom and dad both have at least one copy of the APOE4 allele and he inherited both,” said Guttmann, pointing out that about 40% of people with Alzheimer’s have at least one copy of the APOE4 allele. “That raises your risk of developing Alzheimer’s disease somewhere between 10-15 times the normal population. APOE4 is the major genetic risk factor that we know about.”
Allele—A form of a gene. Each person receives two alleles of a gene, one from each biological parent. This combination is one factor among many that influence a variety of processes in the body. On chromosome 19, the apolipoprotein E (APOE) gene has three common alleles: ε2, ε3, and ε4.
So, Brian LeBlanc began his personal journey with Alzheimer’s one year ago and he’s sharing his story because of a vow he made to his loved ones to continue to spread awareness.
“Because of the fact that if somebody’s listening to what I have to say and they say, ‘Oh wait, I’m experiencing that or that feels like something that I have. I’m gonna go to my doctor,’ at that point my advocacy has helped someone.”
Despite his own efforts to raise awareness, Dr. Guttman says it is LeBlanc’s advocacy that will be far more impactful in reaching the ultimate goals of developing effective medication and possibly a cure.
“It really is those individual stories that are going to move the needle,” Guttman said. “Because, it won’t happen without research; it will not move without research taking place and it takes money in order to do that.”
Brian LeBlanc was diagnosed with early-onset Alzheimer’s a year ago and says he’s now at stage four, out of seven stages. But, he plans to continue his efforts to heighten awareness of this disease that he’s been stricken with, with WUWF and throughout the community, for as long as he can. Stay tuned.
More information about Alzheimer's support and advocacy efforts in Northwest Florida and South Alabama locally is available at online.