We need to talk about a disease that afflicts 1 in 50 people

As a society, we spend a lot of time and dedicate a lot of energy toward raising awareness. For injustices and societal ills, for the plights of people around the world, for conditions and diseases.

Some of those conditions and diseases impact each and every one of us. We all know someone who has battled cancer, heart disease or diabetes. When we hear of such news, we all take a moment and thank our God that it isn’t happening to us.

{mosads}But what about a disease that impacts one in every 50 people? A disease that sits silently undetected, until one day, when it changes your life forever.

Do you think a condition that prevalent is deserving of more awareness?

Many of those people will go their entire lives without issue. But in the United States, a brain aneurysm — a weakened artery wall that over time bulges and fills with blood, most often on the underside of the brain — ruptures every 18 minutes, according to Christine Buckley, executive director of the Brain Aneurysm Foundation (BAF).

That means 30,000 Americans, of every age, race and creed, will experience this frightening condition this year. Of those unlucky men, women and children, 50 percent will die in the first 24 hours. As if not dire enough, 50 percent of those who survive the first 24 hours will die in the first 30 days. For those who survive, roughly two-thirds will suffer from some form of permanent neurological defect.

So, of the 30,000 people who will experience a brain aneurysm rupture this year, only 5,000 people will survive without some sort of permanent damage.

In April 2017, I was one of those people.

I was emceeing an auction in South Boston to benefit the Fourth Presbyterian Church when the worst headache of my life hit me like a ton of bricks. I felt fluid rushing behind my ears, but I wasn’t sweating. I now know the fluid was blood spreading through my brain, as a result of ruptured brain aneurysm.

As a father of two, who was responsible for all the highways, bridges and tunnels in the Commonwealth, and a staff of nearly 3,000, I’ve had my share of headaches. But nothing compared to that afternoon when my wife drove me to Beth Israel Deaconess Medical Center like my life depended on it. Literally.

Despite the fact that 6.5 million Americans are living with an undetected brain aneurysm, the federal government currently designates only 83 cents for every person afflicted by this disease each year.

But that may soon be a thing of the past. On March 27, I will join the Brain Aneurysm Foundation and a delegation of over 100 brain aneurysm survivors, family members, advocates and medical professionals to educate 200 legislative offices on what needs to be done to combat brain aneurysm disease.

Reps. Yvette Clarke (D-N.Y.) and Peter King (R-N.Y.) introduced a bipartisan bill known as “Ellie’s Law” (H.R. 594) in the House that would authorize $25 million in federal funding over five years to the National Institute of Neurological Disorders and Stroke (NINDS) to research this condition.

Named in honor of Ellie Helton, a North Carolina teenager who died in 2014 of a brain aneurysm, the money would go toward research on brain aneurysms, including the study of a broader patient population diversified by age, sex, and race, and would also help researchers learn more about what causes aneurysms and what causes them to rupture, as well as assist with the development of treatment modalities and much more.

The BAF delegation is scheduled to meet key legislators in Washington to sign on as “co-sponsors.” Next steps include finding Senate leads to introduce the bill on a bipartisan basis.

We may never live in a world without brain aneurysms, but with the continued work of organizations like the Brain Aneurysm Foundation and advocacy of civic leaders, we can make them a lot less common.

Tom Tinlin is a former highway administrator for the Massachusetts Department of Transportation and a brain aneurysm survivor. Twitter: @tinlin_tom