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Another Voice: HIPAA law can keep families from getting vital information

By Colleen K. Brennan

As I write this, my son Ryan, 26, is in Bay Shore, Long Island, in an active clinical trial of a Helius Medical Technologies portable neuromodulation stimulator device at Southside Hospital that we hope and pray brings him relief.

Ryan has been suffering relentlessly since 2012 from disabling concussions and traumatic brain injury after a rugby injury.

The main reason my son’s life, hopes and dreams were stripped from him is that the HIPAA Privacy Rule is faulty, so I am now writing an amendment to present to U.S. congressional representatives for sponsorship.

The initial neurologists treating my son did not give his dad or I information we needed about post-concussion syndrome to protect him.

My son was a star rugby player at St. Bonaventure University. He is brilliant, creative, highly talented in sports, writing and recording rap songs and performing as a dancer and actor. He loved to uplift others. Now he’s trapped in what he calls “an invisible prison” with multiple symptoms. Even sunlight is his enemy.

We’re hoping this experimental device will bring us the miracle he needs.

The fallout from six years of nonstop suffering is devastating. Ryan’s first injury was a kick to the brainstem during a St. Bonaventure rugby practice. There was no protocol in place at the college until after he continued to play and suffered further injuries, including a hit at a club rugby match in Lake Placid that ended his plans to play pro rugby.

I’m also personally sending my proposed amendment to President Trump with a plea for another concussion summit to also address opioid brain damage. There’s a great need for public awareness of this issue. We lost my Sean Patrick, 27, to a heart attack in March 2017 after he recovered from a six-year addiction.

I’m also establishing a Concussions Relief Foundation, in honor of my sons, to provide grants for uncovered medical treatments and create a website where patients can enter their symptoms and be matched with global providers, so they don’t have search the internet endlessly like Ryan does.

When Ryan’s symptoms initially escalated, he said it’s “like someone holding your head under water and every time you come up for air, you’re pushed back under.”

As a former Buffalo Jills cheerleader I was well aware of the dangers of concussions but never heard of post-concussion syndrome.

The Centers for Disease Control and Prevention says concussions, ranging from mild to severe, can kill you instantly or result in a “constellation of symptoms.” Even getting your “bell rung” results in a mild one.

Colleen K. Brennan, who lives in West Seneca, is a former journal clerk for the Nevada State Senate.

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