Patrick Lynch formed a company, Believe Unlimited, and created an online comedy series styled after the TV show “The Office.” Dubbed “Stop the Bleeding,” the series—available at stbhemo.com—is a mockumentary about a dysfunctional bleeding-disorders nonprofit organization. It uses humor to tackle serious topics like self-care and self-infusion, women with bleeding disorders and the history of hemophilia.
In 2007, Patrick Lynch’s younger brother, Adam,
died of an intracranial bleed at age 18. Both Patrick and Adam were born
with severe hemophilia A.
Patrick was only 22 at the time. “As you can imagine, the months and, quite frankly, the years that followed were challenging. I remember saying, ‘[Hemophilia] got him. It’s not supposed to happen to us anymore, but it got him,’” Patrick said during the Wednesday morning “Empowerment Through Self-Care” plenary.
Desperate to discover why Adam died, Patrick searched for a clue. He found it in the bottom of a duffel bag buried in a corner in Adam’s college dorm room. The bag was full of factor. Patrick suspects his brother had stopped his prophylaxis.
“I spent a considerable amount of time thinking about why he fell off his regimen,” Patrick said. “I finally determined that it was because my brother never identified as having a bleeding disorder. That took him off his regimen.”
Patrick has never felt the same way. He developed an inhibitor as a child, but immune tolerance induction eradicated it when he was 13. He was able to go on prophylaxis and live, as he refers to it, “A much more empowered life.” He got involved in high school theater and majored in acting at Boston University.
Patrick has always valued self-care for his hemophilia, but Adam’s death made him realize that others—particularly children—may not.
“It made me think about how we as a community are engaging young people,” he said. “And I saw an opportunity to use my acting background to create something that didn’t exist.” His brother didn’t connect to the bleeding disorders community in traditional ways, but like many young people, he loved comedy and the internet.
So Patrick formed a company, Believe Unlimited, and created an online comedy series styled after the TV show “The Office.” Dubbed “Stop the Bleeding,” the series—available at stbhemo.com—is a mockumentary about a dysfunctional bleeding-disorders nonprofit organization. It uses humor to tackle serious topics like self-care and self-infusion, women with bleeding disorders and the history of hemophilia.
“We want to teach young people with a bleeding disorder, but we really want to inspire them,” Patrick said. The goal is to replace the stigma and fear of hemophilia with the idea that the disease can be “Funny or cool or even uplifting,” he said.
Since launching “Stop the Bleeding”, Patrick’s company has also created a live speaker series called “Powering Through”; the Impact Awards to recognize teens with bleeding disorders; a monthly podcast called “Bloodstream” and a claymation series called “Helping Hany” that examines the psychosocial implications of being a girl with a bleeding disorder. He’s also produced videos for the WFH Treatment for All initiative.
All of this fits within Patrick’s definition of self-care. “My journey and understanding of self-care has evolved,” he said. “It’s not just self-infusing, stretching, and maintaining a good diet. For me, self-care is giving back to and empowering the community.”
He also acknowledges that he has a “Privileged definition of self-care—a privilege not shared by 75 percent of our community in developing nations.” That’s why he believes people from the developed world have an obligation to help others who aren’t able to self-infuse or do other aspects of self-care because they lack treatment options. This can include asking product manufacturers how they help people in developing countries and contributing to the WFH Humanitarian Aid Program.
“I miss my brother. For years, I thought about him every day,” Patrick said, his voice breaking. “Let’s continue to ramp up our efforts for our brothers and sisters in developing countries so one day they too may enjoy a privileged definition of self-care.”
Patrick was only 22 at the time. “As you can imagine, the months and, quite frankly, the years that followed were challenging. I remember saying, ‘[Hemophilia] got him. It’s not supposed to happen to us anymore, but it got him,’” Patrick said during the Wednesday morning “Empowerment Through Self-Care” plenary.
Desperate to discover why Adam died, Patrick searched for a clue. He found it in the bottom of a duffel bag buried in a corner in Adam’s college dorm room. The bag was full of factor. Patrick suspects his brother had stopped his prophylaxis.
“I spent a considerable amount of time thinking about why he fell off his regimen,” Patrick said. “I finally determined that it was because my brother never identified as having a bleeding disorder. That took him off his regimen.”
Patrick has never felt the same way. He developed an inhibitor as a child, but immune tolerance induction eradicated it when he was 13. He was able to go on prophylaxis and live, as he refers to it, “A much more empowered life.” He got involved in high school theater and majored in acting at Boston University.
Patrick has always valued self-care for his hemophilia, but Adam’s death made him realize that others—particularly children—may not.
“It made me think about how we as a community are engaging young people,” he said. “And I saw an opportunity to use my acting background to create something that didn’t exist.” His brother didn’t connect to the bleeding disorders community in traditional ways, but like many young people, he loved comedy and the internet.
So Patrick formed a company, Believe Unlimited, and created an online comedy series styled after the TV show “The Office.” Dubbed “Stop the Bleeding,” the series—available at stbhemo.com—is a mockumentary about a dysfunctional bleeding-disorders nonprofit organization. It uses humor to tackle serious topics like self-care and self-infusion, women with bleeding disorders and the history of hemophilia.
“We want to teach young people with a bleeding disorder, but we really want to inspire them,” Patrick said. The goal is to replace the stigma and fear of hemophilia with the idea that the disease can be “Funny or cool or even uplifting,” he said.
Since launching “Stop the Bleeding”, Patrick’s company has also created a live speaker series called “Powering Through”; the Impact Awards to recognize teens with bleeding disorders; a monthly podcast called “Bloodstream” and a claymation series called “Helping Hany” that examines the psychosocial implications of being a girl with a bleeding disorder. He’s also produced videos for the WFH Treatment for All initiative.
All of this fits within Patrick’s definition of self-care. “My journey and understanding of self-care has evolved,” he said. “It’s not just self-infusing, stretching, and maintaining a good diet. For me, self-care is giving back to and empowering the community.”
He also acknowledges that he has a “Privileged definition of self-care—a privilege not shared by 75 percent of our community in developing nations.” That’s why he believes people from the developed world have an obligation to help others who aren’t able to self-infuse or do other aspects of self-care because they lack treatment options. This can include asking product manufacturers how they help people in developing countries and contributing to the WFH Humanitarian Aid Program.
“I miss my brother. For years, I thought about him every day,” Patrick said, his voice breaking. “Let’s continue to ramp up our efforts for our brothers and sisters in developing countries so one day they too may enjoy a privileged definition of self-care.”
source: http://www.wfhcongressdaily.org/2016/07/multidisciplinary-plenary-empowerment-through-self-care-patrick-james-lynch-wednesday-july-27th-930-1000/
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